survey

2008-11-30 22:33:44

If you have a few minutes, please fill out the survey below and e-
mail the results to me at _avillani@healthstaravilla_
(mailto:avillani@...) . All answers
will remain anonymous.
Rheumatoid Arthritis Patient Survey
1) How old are you? 60
2) How old were you when you were diagnosed with rheumatoid
arthritis (RA)? 45
3) What are your overall symptoms?.... constant pain, red, swollen joints,
tiredness etc
4) How often do you experience these symptoms (flare ups, for
example)?........Until I found the Minocin treatment (antibiotic therapy) I
had constant chronic RA..I did not cycle on and off.
5) What brand/medication are you currently using to treat your
RA? 100 mg minocin three days a week.
6) Are you satisfied with the medication you are currently
using? Do you feel your medication successfully reduces your
symptoms and improves your quality of life? My RA is completely resolved on
this maintanance dosage. No pain at all. And my bloodwork , which I have
done yearly, is completely normal.The only thing better than minocin would be
a complete cure.
7) How long have you been using this medication? since 2001
8) Have you used any medications prior, and if so, which ones?
What have you heard about other medications? I used Plaquenil, prednisone,
Mtx. All had side effects, all were very harsh on stomach, none totally
resolved symptoms.
9) Have you heard of Cimzia? What have you heard about it?
From what source? No
10) What factors played a role in your decision to choose a
specific brand (physicians, news stories, family/friend suggestion,
etc.)? Physician
11)Did treatment cost influence your decision of which brand of
medication to you use? No.
12) What did you use to pay for this medication (Private
insurance, patient out-of-pocket, etc.)? I paid myself
13) Why did you switch to the new medication? Went to Minocin because it
WORKED, it was relatively inexpensive....and it had virtually no side effects.
14) What resources did you use to learn more about RA after you
were diagnosed? Computer, books, magazines.
15) Do you wish there were more resources available for you, or
other RA patients, to learn more about the conditions of RA and the
treatment options? Ideally, what tools would help you?
16) Do you attend a patient support group or communicate with
other patients? On line groups
17) What has your experience with physicians been like? Not happy with
rheumatologist. now go to an internast.
18) What type of physician diagnosed you (i.e., primary care
physician, rheumatologist, immunologist, etc.)? primary care
19) Is there anything else that would be helpful for other
patients to know when talking to doctors about RA? Use Minocin first and
go to a doctor who has heard of antibiotic therapy. Educate yourself. Your
health is YOUR responsibility. Doctors get paid to prescribe certain
drugs, that tells me they have a financial perk in making sure you use these
items. It clouds their judgement. Payments to docs for prescribing meds should
be
banned, money corrupts even the most well intentioned doc.
20) Do you suffer from another autoimmune disease (Crohn's
disease, psoriasis, etc.) and if so, how has this affected your
treatment options? no
21) What personal aspects of your life (physical exercise,
emotional well-being) have been impacted by this chronic illness? Do
you feel that this illness has taken away something that you want
back? Until I found the right therapy it took everything away.
22) If you are in the tri-state area, would you be open to a phone
or live interview to tell your story? yes
Thank you for taking the time to share your story. Please let me
know if you have any questions. Please enjoy the rest of your week.
**************Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

Re: Thomas McPherson Brown M.D Antibiotic Therapy

2008-11-30 19:54:42

In Arthitis Today, the program was explained. Kathleen Turner (
Romancing the Stone) states this therapy saved her live from RA.
I found that my physicians here in Toronto knew very little about Dr
Browns theory on low dose antibiotic treatment.

Re Arthritis Insight site/chat

2008-11-30 04:48:43

Hi
Have just found out that the site was sold by its owners when it
crashed in December. The new site is not fully running yet, but the
previous owners have set up a new site with chat and message boards
which is.
www.rheumorweb.com
Hope this is of usr to those who were asking a few weeks ago
Margaret

Re: Enbrel Injection site Reaction

2008-11-30 02:23:56

I have been on Enbrel for two years now and I have only taken 5
shots of the new 50mg and with the first 2 I had terrible reactions
in the stomach but the last 3 there was none. Taking the shot still
feels like I am sticking a pencil into my stomach and trying to push
it in. They say these are the same needles as the one used on 25mg
shots but I don't think so! There is too big of difference between
the two to be the same and the new ones do measure bigger with a
digital caliber.
Dick

Re: [PsoriaticArthritis] For Fran

2008-11-30 00:38:43

Hi Fran
Sorry to hear you are so down. You have been so encouraging to others, now
it is our turn to encourage you. I definitely know the feeling of the horrid
back pain.
It was much better after all my procedures, but is slowly creeping back.
Don't worry about resting and taking it easy. This is one of the important
things that helps. I no longer feel guilty when I lie down for periods during
the day. My husband is wonderful also. Don't know what I would do without
him.
Take care and keep your chin up girl. We can all do this together!
Barb

Re: [rheumatic] SD triple antibiotic ,to RONI

2008-11-29 14:29:59

Hi Roni
Thank you for the sharing your information.I did
combination of Clindy and minocine for 3 months,
didn't get noticable result. How long did it take you
to see improvement after taking minocin and
Metronidazole?
I have yeast infection even before starting AP. it
would come and go by itself. now I have it and doesn't
go away. i am taking probiotic 2 tablet a day. Do you
recommend any probiotic brand and its dose?
Thank you
soheila

Re: [rheumatic] Re:Vit D Monique

2008-11-29 09:35:12

Well said. I am on M/P and have had my D-25 and D-125 tested several times. I
am now in the correct ratio and doing very well. Dolores
Monique Sauve <moniquesauve@...
tested and then make your decision about
whether you need D or not? the details for proper testing are on the MP
site. i had both mine tested and 25 were normal and 1-25 was very high
so i stay away from D. remember that D is a hormone not a vitamin and
can act as a steroid so that initially large doses can make you feel
better but then like a steroid you will eventually get worse.
monique

To Janet: It still can get worse!

2008-11-29 05:47:08

Dear Janet, Well Iām here to say, that even as bad as I was feeling it still
can get worse.Ā It seems almost impossible now that Iām writing this, but
itās true.Ā Somehow, I guess I pushed myself, (about 10 minutes I guess) I
stayed on my feet on the tile floor in the kitchen when they were swollen and
already sore.Ā By that evening, I couldnātā even stand on them.Ā I spent
all of yesterday in the recliner with my husband waiting on me.Ā (Why he
hasnāt shot me by now is anyoneās guess.) I am sooooo sick of this too.Ā He
spent the whole evening with me watching DVDs when I know he would rather have
done something else.Ā But seeing how I canāt leave my chair, he felt limited
Iām sure.Ā I feel about as low as Iāve ever been with this right now.Ā
I see my pain doctor on Wednesday to see how my back is, and then I get to tell
him about my feet.Ā He will probably want to shoot me too. Ā On top of all of
this, my youngest has had a horrible flare of fibromyalgia and has missed a
whole week of school.Ā Ā She got a call from her advisor asking her if maybe
she should think about changing her career choice since teaching is so physical
and her health is so bad.Ā So now on top of being ill, she is depressed as hell
over this.Ā They donāt take into consideration that she is a straight A
student or simply wonderful with children.Ā The most frustrating thing is I
canāt do anything to help her, since I getting to the bathroom right now is a
painful struggle.Ā
Iām sorry Iām complaining so much, but you caught me at a low point I
guess.Ā I hope your new choice of therapy works.Ā I donāt blame you for
giving up on Enbrel.Ā You sure gave it a long try.Ā At least it didnāt hurt
you or make you sick.Ā Iām starting to wonder about Arava, but I thought I
felt so much better when I first started taking it.Ā Maybe it was just a
placebo effect?Ā I know that can really do wonders at times by actually
releasing your own endorphins.Ā Iām still trying to stay hopeful and pray
that this lets up some soon.Ā I know you arenāt giving up and Iām not
either, but that sure doesnāt stop us from feeling low.Ā
Take care Janet, and I sure hope things improve for you soon.Ā Let me know how
the nutritional plan works.Ā Love, FranĀ PS, I donāt think I have the
strength to even Ribbitā¦lol.

Re: [rheumatic] SD triple antibiotic soheila

2008-11-29 01:39:05

Hi,
I read your post about the triple antibiotic and SD. I did minocin and
Metronidazole 250 mg towice a day. It did a nice job of lowering my SD count.
Later my doc added clindy when I had a flair due to the stress of taking care of
my terminally ill mom. That is what got me into trouble with the CDiff. So make
sure you are take a VERY good probiotic and lots of it.
Hope you are doing well.
Roni

Amgen pulls Enbrel TV ad on FDA order - article

2008-11-28 19:01:46

Amgen pulls Enbrel TV ad on FDA order
By Carla Mozee, MarketWatch
Last Update: 5:59 PM ET Feb. 19, 2005
SAN FRANCISCO (MarketWatch) - Amgen Inc. was ordered by regulators to pull a
television ad that overstated the effectiveness of its Enbrel psoriasis
treatment.
In a letter to Amgen (AMGN: news, chart, profile) Chief Executive Kevin
Sharer, the Food and Drug Administration said the company's 60-second TV
spot inappropriately expanded the indication of the injectable drug and
minimized its risks.
Nurha Hindi, a spokeswoman for Amgen, told MarketWatch on Saturday that the
company had pulled its sole Enbrel ad, which had run nationally. Hindi said
she didn't know how much the ad cost Amgen to produce and distribute.
The FDA said the ad featured people with clear skin, devoid of any plaque
often associated with psoriasis, a noncontagious skin disease with no known
cure.
Enbrel was originally approved by the FDA in 1998 for the treatment of
rheumatoid arthritis.
The agency said Enbrel's clinical trials of patients with psoriasis plaque
show patients experienced at least a 75 percent reduction of psoriatic
symptoms from a baseline set by an index of psoriasis area and severity.
"To our knowledge, Enbrel has not been shown to provide complete clearing of
psoriatic skin," said the FDA.
If Amgen, based in Thousand Oaks, Calif., has data to support such a claim,
the information should be submitted for review, the FDA said.
The ad stated that the most common side effects with Enbrel are
injection-site reactions, upper respiratory infections, and headaches,
according to the FDA. Amgen doesn't indicate that Enbrel's warning label
identifies stronger side effects, such as malignancies, serious infections
and the risk of tuberculosis, the FDA said.
Hindi said the company is reviewing the letter.
"We're really digging into the letter and not making any judgment calls,"
about the FDA's criticism, said Hindi.
FDA officials also told Amgen that it must submit a comprehensive plan to
communicate "truthful, non-misleading and complete corrective messages," to
the audience that may have seen the ad.
Hindi said Amgen will work closely on the issue with its Enbrel marketing
partner, Wyeth (WYE: news, chart, profile) .
Shares of Amgen closed down 35 cents to $62 on Friday.

FW: There is hope!!!

2008-11-28 13:04:03

Dear Group, I came across this and had to pass it on. I know for me on
certain days, I need hope that there are going to be new drugs out to help
us with our pain. I know this isnt going to be instant help for anyone,
but at least there is hope on the horizon. Love, Fran
"The Search for the Killer Painkiller" by Andrew Pollack.
New York Times, February 15, 2005
Despite all the advances of modern medicine, the main drugs used to
fight pain today are essentially the same as those used in ancient
times.
Hippocrates wrote about the pain-soothing effects of willow bark and
leaves as early as 400 B.C. Opium was cultivated long before that.
Aspirin and morphine, based on the active ingredients in these
traditional remedies, were isolated in the 1800's and helped form the
foundation of the modern pharmaceutical industry.
But scientists are now trying to find new ways of fighting pain. The
effort has been given new impetus by the recent withdrawal of Vioxx
and the questions surrounding the safety of similar pills like
Celebrex and Bextra. Those concerns come on top of the problems of
abuse of narcotic painkillers like OxyContin. "There's a huge void,
and no one is filling it," said Remi Barbier, chief executive of Pain
Therapeutics, a company in South San Francisco, Calif.
But Dr. Barbier's company and dozens of others are trying. And some
new treatments may come from things in nature that soothe or sting,
like marijuana, hot chili peppers, nicotine and deadly toxins of
snails and fish.
While the withdrawal of Vioxx leaves more room for newcomers, it also
makes their challenge harder. Not only have opioids and aspirin been
hard to beat, but the Food and Drug Administration is now expected to
demand more evidence that drugs are safe before approving them.
But what scientists have going for them now is a more detailed,
though still not complete, understanding of the molecular mechanisms
by which pain is perceived. The goal is to create drugs that block
specific parts of the mechanism while avoiding the side effects that
have plagued opioids and anti-inflammatory drugs like aspirin.
Tens of millions of Americans suffer from chronic pain, according to
various surveys, and millions more suffer acute pain from an illness
or injury each year. Specialists say pain has received inadequate
attention and treatment.
"Pain has historically been viewed as a symptom of other things that
are more important," said Dr. Russell Portenoy, chairman of pain
management and palliative care at Beth Israel Medical Center in New
York. But now, he said, there is a growing realization that "chronic
pain is itself an illness, and it's a complex illness."
Normal pain - from touching a hot stove, for example - is a
beneficial warning system. After an injury nerves can become extra
sensitive to pain. A warm shower can be painful on a sunburned back.
That, too, is protective, said Dr. Clifford J. Woolf, a professor of
anesthesia research at Harvard and Massachusetts General Hospital.
The sensitivity forces a person to protect an injured area so it can
heal.
But in some cases this nerve hypersensitivity continues well after
the stimulus is gone, like an alarm frozen in the "on" position. The
pain takes on a life of its own.
"Persistent pain is not just long-term acute pain," said Dr. Allan I.
Basbaum, a professor of anatomy at the University of California, San
Francisco and editor of the journal Pain. "The nervous system has
changed."
Doctors classify pain into various categories, but there are two main
types of persistent pain. One, sometimes called nociceptive pain,
results from damage to tissues, as from arthritis or a burn. The
other, called neuropathic pain, results from damage to the nerves
themselves and is often set off by diseases like diabetes or shingles.
Opioids, like morphine or OxyContin, are used for more severe
tissue-type pain. But the drugs have side effects, including
constipation and a slowdown in breathing. Users can become tolerant,
meaning that they need increasingly higher doses, or they become
addicted to the drugs.
Aspirin and similar drugs like naproxen (sold under names like Aleve
and Naprosyn) and ibuprofen (Advil and Motrin) are called
nonsteroidal anti-inflammatory drugs or Nsaid's and are used for less
serious pain. They block certain chemicals that contribute to
inflammation, but they can also cause stomach ulcers and bleeding.
Vioxx, Celebrex and Bextra are newer types of Nsaid's called cox-2
inhibitors, which were intended to cause fewer gastrointestinal
problems. But Vioxx was found to raise the risk of heart attacks and
stroke, and there is concern the other cox-2 inhibitors may do so as
well.
Nsaids don't work for neuropathic pain, specialists say, and there is
disagreement on how effective opioids are. Doctors often use epilepsy
drugs like Pfizer's Neurontin, which calm overexcited nerves that can
cause seizures. Certain antidepressants are also used, most recently
Eli Lilly's Cymbalta, which is also approved as a treatment for
diabetic neuropathic pain.
Some efforts to develop better pain relievers focus on variations of
the existing treatments.
For example, DOV Pharmaceutical, based in Hackensack, N.J., is in the
final stages of testing a drug, bicifadine, for lower back pain. Like
some antidepressants, it helps prolong the action of two brain
chemicals, serotonin and norepinephrine.
Pain Therapeutics is in the final stages of testing a combination of
an opioid with a small amount of a drug that counteracts the opioid's
effect. The theory is that this will stop the buildup of tolerance,
allowing opioids to be used more effectively.
NicOx, a French company, is testing a drug that breaks down in the
body into naproxen and a chemical that releases nitric oxide. Nitric
oxide plays many roles in the body, including dilating blood vessels
and spurring mucus formation in the gastrointestinal tract. Some
early trials suggest, though not definitively, that the drug may have
lower gastrointestinal and cardiovascular risks than other Nsaid's.
But experts say there is also a need for totally new categories of
pain relievers, ones that work in entirely different ways.
One such drug, called Prialt, was approved by the F.D.A. in December.
It is a synthetic version of a toxin that a South Pacific marine
snail uses to paralyze its prey. The drug impedes the transmission of
pain signals through the nerves by blocking channels through which
calcium ions flow into nerve cells.
"This is really the first new analgesic in two decades," said Lars
Ekman, head of research and development at Elan, the Irish company
that developed the drug. He said the drug was nonaddictive and 1,000
times as potent as morphine.
Potent, yes, but also problematic. To minimize side effects as
diverse as heart rhythm disturbances and hallucinations, the drug
must be injected directly into the fluid surrounding the spinal cord
with a catheter and implanted pump. That will limit its use, as will
the F.D.A. approval, which is only for severe pain that is not
responsive to other analgesics.
Neuromed Technologies of Vancouver, British Columbia, says it has a
calcium channel blocker that is safe enough to be taken orally. But
the drug is only in the first stage of clinical trials, so there is
no real proof yet that it is safe and effective.
Another approach is to block sodium channels. This is how local
anesthetics like those given by dentists work. Wex Pharmaceuticals of
Vancouver is testing tiny amounts of a toxin from the fugu, or puffer
fish, a dangerous delicacy in Japan.
Chili peppers are less deadly, but their main ingredient, capsaicin,
can cause intense pain when put in the mouth or rubbed on skin.
Exposure desensitizes and temporarily damages the pain sensors.
Some over-the-counter pain ointments contain capsaicin. NeurogesX of
San Carlos, Calif., is developing a patch containing highly
concentrated capsaicin to be put on the skin for an hour in a
doctor's office. A local anesthetic would be used to blunt the pain
of the treatment itself. But after the patch is removed, pain in that
area is diminished for weeks, the company's studies have shown.
AlgoRx of Secaucus, N.J., is developing a capsaicin formulation that
can be injected into joints or spread on surfaces exposed during
surgery.
A different approach would be to block the sensors on nerve cells
activated by capsaicin, called the TRPV1 or VR-1. That would
theoretically provide pain relief without the initial pain. The drug
giant Merck and tiny Neurogen of Branford, Conn., are working
together on drugs to block this receptor, as are other companies like
Amgen and GlaxoSmithKline.
Derivatives of marijuana are also being looked at. "Certainly with
marijuana there's thousands of years of human experience that in
addition to the psychoactive effects there are also medicinal
effects," said Dr. James E. Shipley, senior vice president for
clinical development and medical affairs at Indevus Pharmaceuticals
in Lexington, Mass. "The problem heretofore is that you can't have
one without the other."
Indevus is testing a drug based on a chemical,
tetrahydrocannabinol-11-oic acid, that THC, the main ingredient in
marijuana, turns into in the body. In healthy volunteers, Dr. Shipley
said, the drug caused no psychoactive effects. But there has been
only one small trial showing that the drug provided better pain
relief than a placebo.
GW Pharmaceuticals, a British company, is further ahead. It says it
is close to getting approval from Canada to sell a mouth spray
derived from marijuana as a treatment for neuropathic pain in
patients with multiple sclerosis. Nicotine, the poisonous substance
in tobacco, also has soothing effects. Companies like Abbott
Laboratories and Targacept, which was once part of cigarette maker R.
J. Reynolds, are in early testing of drugs designed to bind to some
of the same receptors in the body as nicotine but not be addictive.
Rinat Neuroscience of Palo Alto, Calif., and Genentech are working
together on an antibody that blocks nerve growth factor, a protein
made by the body that stimulates the growth of nerve cells.
Genentech initially tested the growth factor to see if it would
reverse nerve damage from diabetes. But patients getting the drug
experienced severe pain. It turns out that nerve growth factor has a
second role: it is released after an injury and helps activate the
pain pathway. So the companies figure that blocking it will stop pain.
Experts like Dr. Basbaum and Dr. Woolf, who consult for various
pharmaceutical companies, say that controlling pain may require a
combination of drugs hitting different mechanisms, just as cancer is
treated with combinations. Ultimately, they say, the goal will be to
tailor drug therapy to each patient based on the mechanisms
underlying that person's pain.
New drugs are not expected to reach the market for a few years, and
many may fail or have unacceptable side effects. Still, the void left
by Vioxx has buoyed companies like NicOx, which two years ago faced a
bleak future when a big drug company it was working with decided not
to pursue its drug.
"You're standing on a rock surrounded by water," said Vaughn Kailian,
a director of NicOx, "and just when you think you're going to vanish
under the waves, the water recedes and you're standing on a mountain."

Patients willing to talk about Rheumatoid Arthritis?

2008-11-28 03:44:40

Oh good catch Maz. I didn't know that's what Cimzia was. How odious.
**************
Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

Re:Vit D

2008-11-27 20:12:10

why not get both D levels tested and then make your decision about
whether you need D or not? the details for proper testing are on the MP
site. i had both mine tested and 25 were normal and 1-25 was very high
so i stay away from D. remember that D is a hormone not a vitamin and
can act as a steroid so that initially large doses can make you feel
better but then like a steroid you will eventually get worse.
monique

Re: [PsoriaticArthritis] Do vitamins help you?

2008-11-27 15:46:15

Hi Christine ...... I just started with MTX and Enbrel. I was put on folic acid
along with these meds because my rheumy says that these meds deplete the folic
acid in your body. I also take a multi vitamin, calcium and
glucosamine/chondroitin. I figure it can't hurt.
Good luck to you, Shar

Do vitamins help you?

2008-11-27 05:58:03

I take iron (for anemia), folic acid, calcium and a multi-vitamin
daily. Honestly, I don't think they do anything for my energy
level. My doc thought the iron would give me some energy, but it
doesn't. I stopped taking vitamin c supplements b/c they also did
nothing for my immune system. Just curious to see if anyone has had
similar experiences.
Christine

Re: [PsoriaticArthritis] BONE SCAN,

2008-11-27 01:24:53

Hi,
Thanks to everyone for your imput on the bone scan, I know have a clearer
picture ( no pun intended ) of what it is. Your explanations where very in depth
and appreciated. I'm going to dicuss it further with my rheumatologist if my
issues do not resolve . Prednisone was just added to my drug list so hopefully
that will be helpful enough to knock it all back. I'm just stared at 10mgs and
will taper down from there over a course of a few weeks or so depending on my
response.
Both orthopedists as well as my rheumatologist are certain it's PA that is
causing my issues, with the exception of my disc problems ( which may or may not
be a contributing pain factor ) . I have widespread PA that effects many of my
joints, both large and small. My PT does not consist of exercising this time
around, although last summer I went thru a three month course of PT where I did
a lot of exercises that was less then helpful. Right now my PT is deep heat
ultrasound coupled with gentle stretching, they also use topical steriods, the
process is known as phonophoresis ( sp ) and is thought to help reduce
inflammation. The orthopedic spine clinic that I went to uses it often with
varying success, the other option I had was to have cortisone injections
directly into my spine, and we thought it best to go less invasive at the time.
My hip issues are seperate than my spine, however it's all PA so I thought if I
would ask if anyone had any imput as far as cortisone injections
into the SI joint, if that offered any relief to thier hips as well. Maybe I
won't it if the prednisone does the job.
Anyone use prednisone and find it helpful? I know it's not used a whole lot in
PA but is in RA.
I am on Enbrel, relafen, darvocet and prednisone as I have active swelling in
many of my joints due to a full PA flare. I was off enbrel for three weeks due
to a nasty cold most likely contributing to this flare, then again it's PA so
who knows....with the exception of my spine & hips problems I was going along
pretty well, oh well....this too shall pass.
Thanks again, Take care.
pljera7 <plera@...
Especialy to Sheeba452003
The difference between a BONE scan and xray or MRI are the way the
tests get the pictures. MRI and Xray (CT is xray in 3d) look at
anatomy, (the structure), while nuclear medicine sees medicine that
is guided by physiology, (the way the chemicals are pushed around by
living tissue).
Look at the medicines injected. The MRI and contrast radiology use a
dye , something thick enough to show up better on the resulting
pictures, (for MRI gadolinium has a similar function). The dye goes
where you put it, into the blood, and through the excretion systems
or injected into a body cavity to get better contrast on the film or
screen. There is usually enough dye or contrast to potentially
change the way you feel, and some people's systems react to the dye,
sometimes even an allergic reaction. Nuclear medicine uses very
small amounts of chemicals that are radioactive (the part the
machine sees). The radiation from the nuclear medicine is slightly
more or the same as an xray, and alot less radiation to the patient
than a CAT scan. MRI does not use Xrays, and the risks from the
magnetic field are usually insignificant. Chemically the nuclear
medicine is a trace chemical (very small amount), so you do not sign
a consent form for risk for nuclear medicine like you do for CAT and
MRI. You should minimize xray/nuclear exposure when pregnant.
The bone scan is more expensive and takes longer. It is used because
is more sensitive since it shows what is biologically active. You
need xrays from different times to see changes between films to plot
out what damage is old and what is new. The sensitivity is because
the nuclear medicine is actively transported by the living cells in
the tissue of the bone, something that doesn't happen with contrast
agents. Also, nuclear bone scans routinely look at the entire body,
with less radiation than CT or xray ( for the whole body). Of
course, if you just need a picture of say a finger, xray exposure
would be less for xray, since nuclear medicine goes everywhere in
your body when injected.
Bone scans are mostly used to find the extent (if any) of cancer or
fractures but also show increased or decreased ares of activity
caused by inflammation (like PA), or Pagets disease or bone infarct,
or reaction to fracture or a dozen other things. With cancer, bone
scan's increased sensitivity means it can detect disease 6-12 months
before xray.
CT, xray and MRI all show more detail than nuclear medicine for
evaluating joint damage that has already occurred. They are also
better for seeing soft tissue damage. Since PA medications are
systemic, WHERE the disease is active isn't overly important, just
the EXTENT of disease. For EXAMPLE, back pain is very common, and
say you have PA in your fingers. Is the back pain PA?? Treatment for
widespread active PA might deemphasize physical therapy in favor of
more aggressive anti-inflammatory agents and more expensive PA meds.
But if the back has mild OA and degenerative changes, THEN treatment
would be different and you might benefit from exercise. That's where
a bone scan might be used, as well as to rule out other diseases.
Details of BONE SCAN , what to expect, see my 3 previous recent
posts.

Re: [rheumatic] Patients willing to talk about Rheumatoid Arthritis?

2008-11-26 20:56:55

Hi, Glad your company is taking an interest in these rheumatic type of
diseases.. I am presently in the process of writing a book about Th1 diseases. I
have Scleroderma. There is a lot more to these diseases that just answering
these questions, so my book is to promote awareness to the medical society to
let them know how we ill people feel, learn and cope. I am publishing true
stories from those who live it.~~~~~Dolores P. Rosner
anvillanihealthstarpr <anvillanihealthstarpr@...
all,
I hope you are having a wonderful week. I was hoping to get in touch
with patients dealing with Rheumatoid Arthritis. I work for a public
relations firm and one of my clients is in the Rheumatoid Arthritis
space.
We work heavily in patient advocacy and disease awareness and we are
looking to obtain some information from individuals who are
comfortable about sharing their perspective on Rheumatoid Arthritis.
This could include education, disease management, medication issues,
etc.
If you have a few minutes, please fill out the survey below and e-
mail the results to me at avillani@.... All answers
will remain anonymous.
Rheumatoid Arthritis Patient Survey
1) How old are you?
2) How old were you when you were diagnosed with rheumatoid
arthritis (RA)?
3) What are your overall symptoms?
4) How often do you experience these symptoms (flare ups, for
example)?
5) What brand/medication are you currently using to treat your
RA?
6) Are you satisfied with the medication you are currently
using? Do you feel your medication successfully reduces your
symptoms and improves your quality of life?
7) How long have you been using this medication?
8) Have you used any medications prior, and if so, which ones?
What have you heard about other medications?
9) Have you heard of Cimzia? What have you heard about it?
From what source?
10) What factors played a role in your decision to choose a
specific brand (physicians, news stories, family/friend suggestion,
etc.)?
11) Did treatment cost influence your decision of which brand of
medication to you use?
12) What did you use to pay for this medication (Private
insurance, patient out-of-pocket, etc.)?
13) Why did you switch to the new medication?
14) What resources did you use to learn more about RA after you
were diagnosed?
15) Do you wish there were more resources available for you, or
other RA patients, to learn more about the conditions of RA and the
treatment options? Ideally, what tools would help you?
16) Do you attend a patient support group or communicate with
other patients?
17) What has your experience with physicians been like?
18) What type of physician diagnosed you (i.e., primary care
physician, rheumatologist, immunologist, etc.)?
19) Is there anything else that would be helpful for other
patients to know when talking to doctors about RA?
20) Do you suffer from another autoimmune disease (Crohn's
disease, psoriasis, etc.) and if so, how has this affected your
treatment options?
21) What personal aspects of your life (physical exercise,
emotional well-being) have been impacted by this chronic illness? Do
you feel that this illness has taken away something that you want
back?
22) If you are in the tri-state area, would you be open to a phone
or live interview to tell your story?
Thank you for taking the time to share your story. Please let me
know if you have any questions. Please enjoy the rest of your week.

Thomas McPherson Brown M.D Antibiotic Therapy

2008-11-26 20:52:28

Have any of you tried this or seen any of this antibiotic therapy?
I came across this website and was wondering if anyone else had any experiences.
I am ready to try anything!
http://www.rheumatic.org/index.html
KV

lurker' with first Rheumy appointment

2008-11-26 05:09:10

Hi Tony
You didn't say if you were taking Methotrexate? From your history that looks
like the next step for you? I would say that if you have the private option
as I had, then you have about two years worth of credit left with the
private and then it's on to the good old NHS! I can't believe that this is
your first appointment with a rheumatologist that's crazy! hopefully when
you see him he will get you on to some kind of DMARD as the drugs you are
taking are doing nothing to stop the PA they are only easy the symptoms that
you have. Also get your Rheumatologist to refer you to a dermatologist as
mine did and because of the private insurance I did not have to pay for her
either. I hope you find the right combo. as an aside I am currently taking
Arcoxia, but I think this will be stopped soon due to the risks, so I will
probably move on to the MTX in the next couple of weeks I'm a bit wary of
it, but it's that or a wheelchair I guess that makes it a lot clearer for me
Micky
London

Re: 'lurker' with first Rheumy appointment

2008-11-26 01:36:08

Hi Tony
My name is Jackie, I'm 36 and live in Scotland and have be seeing a
rheumatologist for the last 3 years on the NHS.
On my first visit I had blood tests and x-rays done. The x-rays
showed up the extent of the bone damage which was only in my toes at
that time. From there I seen the rheumatologist every six months and
her putting me on a succession of anti-inflammatories, painkillers
and muscle relaxants. Last year I was put on a 3 month trial of
infliximab along with methotrexate which worked great on my skin but
not so much in my joints so I have now been taken off that. I did
speak to other patients while I was in getting the infusion and it
had really made a big difference to them. Usually to get prescribed
the newer drugs like infliximab and enbrel you need to have tried a
few of the other disease modifying drugs such as methotrexate and
failed on them. I've now been told that I probably need a hip
replacement soon so I've been referred to an orthopaedic surgeon -
still waiting on an appointment.
I don't know whether this helps you or not but if you want to ask
anything else let me know.
Jackie

Re: [rheumatic] to ROBERT

2008-11-25 17:43:00

Hello Robert
I have scleroderma and my RF is negative.I asked my
doctor today to prescribe Metronidazole and
ketocanazole for me today. I AM ON MINOCIN SINCE 10
MONTHS AGO. Do you know if this triple antibiotic
works for scleroderma too or just for RA?
I appreciate your advice.
Thank you
soheila

CHRISTINE Enbrel injection reaction

2008-11-25 12:06:06

I had ONE injection site stay hot for several weeks. It was the
beginning of a remission for me. But I think you should CONTACT YOUR
DOCTOR immediately, and before you take any more shots. Further
research is a good idea too.
Whenever I get sick or have infections I reduce or stop my
methotrexate and enbrel, for a few days. Being sick often means a
reduction of symtoms for me, and I take that as a sign that my
immune system is actually attacking some bug instead of me. So I
give my system a chance to recover from the meds. Enbrel and
methotrexate reduce the fast growing reactive parts of the immune
system, the part you need to fight off new bugs.
In your case, we can hope that the injection reactions will cause
your body to reassess its attack and reduce the killer T4 numbers,
but with multiple recurring reactions, it doesn't sound like it.
Further questions like how bad are the sites and specifics are
something your doctor should address. Is the medicine reducing the
PA symtoms?
Pete from baltimore

Re: [PsoriaticArthritis] Review of Medical Nutrition Therapy for Psoriasis

2008-11-25 05:25:29

Very interesting. Five months into my gluten-free diet, my P is the best it
has been in fifteen years. About the same time I started that diet, I
joined the Health Incentive program at work that requires five servings of
fruits/vegetables a day.
Ks Di

RE: [rheumatic] Vit D

2008-11-25 02:43:36

Kathy, I have SLE & I started taking 4000IU's of Vitamin D daily based on
recent research & I think it helps me particularly in areas of fatigue. I
think that Vitamin D is proving to be of enormous value in many conditions.
Patrice
_____

Psoriasis Advocacy Group Speaks at FDA hearing

2008-11-24 17:23:51

A recent article on PharmaLife
<http://www.pharmalive.com/News/index.cfm?
articleid=214107&categoryid=30
"KENSINGTON, Md., Feb. 17 /U.S. Newswire/ -- "Psoriasis Cure Now," a
nonprofit patient advocacy group, today urged a joint hearing of two
Food and Drug Administration Advisory Committees to tread carefully
as it prepares to issue recommendations about COX-2 selective non-
steroidal anti-inflammatory drugs."
"Speaking before the Committees Thursday, the president of the group
reminded the panels that 6.5 million Americans with psoriasis need
additional treatment options, the approval of which could be
jeopardized by the wrong response to the COX-2 controversy. "Based on
what we have heard to date, any errors surrounding the COX-2's appear
to be failures in post-approval monitoring, rather than errors in the
initial approval of the drugs," said Michael Paranzino, president of
Psoriasis Cure Now..."
"Many psoriatic arthritis patients are in a difficult spot, alarmed
by recent reports of the apparent risks of these drugs, yet reliant
on these medications to maintain their quality of life," Paranzino
continued...."
For more of this story, go to
<http://www.pharmalive.com/News/index.cfm?
articleid=214107&categoryid=30
pattyb in a dusky Pineywoods of East Texas

Re: [PsoriaticArthritis] SHAR, immune system, cancer

2008-11-24 15:06:34

I would strongly encourage you to speak to your oncologist before proceeding.
In theory, now that you are over 5 years cancer-free, your odds of getting
cancer are not much different than someone who has never had breast cancer so it
would seem logical that you should be able to take the same medications as
people who have not had the disease. This is a big decision, though, and I
think it prudent to consult with your oncologist and rheumatologist.
Kathy F.

Re: I don't want to play this game anymore

2008-11-24 05:52:18

dear jane,
i understand you - 100%... my rheumy always blames everything on
fibro as well arghhhhhhhhhhhhhh...
about a year ago i started taking 20 mg amitriptyline an hour before
going to bed and this has improved the dazed, flu-y feeling so that
it is not as severe. i decided to test myself earlier this week and
didn't take it for 3 days. by tuesday i was a zombie and felt
physically sick to my stomach from it - and this was with 'sleeping'
every night - i was just not sleeping properly. tuesday night i
took it again and slept 11 hours straight - even for me that is
something - pain from pa and fm still here - still am tired, but not
as zombie like and not sick to my stomach while taking the amitryp.
i just thought i'd mention it to you, just in case you haven't tried
it and it would help.
best,
karen

Review of Medical Nutrition Therapy for Psoriasis

2008-11-24 02:41:24

Medical nutrition therapy as a potential complementary treatment for
psoriasis - five case reports
http://www.findarticles.com/p/articles/mi_m0FDN/is_3_9/ai_n6228168
Alternative Medicine Review, Sept, 2004 by Amy C. Brown, Michelle
Hairfield, Douglas G. Richards, David L. McMillin, Eric A. Mein, Carl D.
Nelson
Amy C. Brown, PhD, RD--Assistant Professor of Human Nutrition,
Department of Human Nutrition, Food & Animal Sciences, University of
Hawaii at Manoa
Introduction
Psoriasis is a chronic, inflammatory skin disease characterized by
thickened, silvery-scaled patches. (1) Its cause is not yet known, but
numerous studies link it with inflammatory and immune mechanisms most
likely associated with a genetic predisposition that can be triggered by
stress. (2)
Because there is no cure for psoriasis, the multiple treatment options
currently available only attempt to reduce the severity of symptoms.
Non-pharmacological therapies include sunlight and stress avoidance,
while pharmacological treatments are either topically applied in the
form of creams or lotions, orally ingested, or injected. Most patients
are treated with topical therapies sometimes combined with phototherapy
and/or systemic medications.
Topical applications include:
* Anthralin--A synthetic substance made from a coal tar derivative used
since the 19th century; however, it is a highly irritating substance
that needs to be thoroughly washed off after each session.
* Calcipotriol--A synthetic form of vitamin [D.sub.3] that inhibits cell
proliferation but may elevate serum calcium.
* Corticosteroid treatment--Common steroids such as Diprolene, Psorcon,
Temovate, and Ultravate improve psoriatic lesions, but side effects
include skin thinning, hair follicle infections, facial redness,
rosacea, a worsening of diabetes mellitus, and reduced endogenous
steroid production.
* Topical retinoids--Some patients experience partial clearing of
psoriasis with topical retinoids, but often abandon therapy due to skin
reddening and irritation.
* Topical Tacrolimus and Pimecrolimus--These topical treatments
represent a new class of nonsteroidal topical immunomodulators; however,
only a few studies have been performed and side effects include a
burning sensation.
Oral medications are usually reserved for severe psoriasis cases because
of potentially serious side effects. Among the systemic therapies
associated with significant side effects are acitretin, methotrexate,
cyclosporine, hydroxyurea, and thioguanine. Individuals on these
medications must be closely monitored and the medications cannot be used
for long-term treatment. (3) Other systemic therapies include monoclonal
antibodies, (4) protein specifically targeting memory T cells, (5)
fumaric acid esters, (6) novel retinoids, and macrolactams. (7) In
addition to potential side effects, current oral and topical treatments
are often only a partial or temporary solution.
Annual medical treatment costs for psoriasis in the United States are
estimated at approximately $1.6-3.2 billion. The need exists for more
effective treatment options with fewer side effects.
One such option is medical nutritional therapy. Although the American
Dietetic Association promotes no specific diet for psoriasis,
researchers have reported the effect on psoriasis of modifying various
aspects of the diet. Strong scientific evidence exists for a gluten-free
diet; (8-9) some scientific evidence exists for a vegan diet, (10) rice
diet, (11) and supplementation with fish oil (12) and vitamin D; (13)
and weak scientific evidence exists for a low protein diet, (14)
fasting/starvation, (15) and supplementation with evening primrose oil,
(16) taurine, (17) and zinc sulfate. (18-19)
Psoriasis patients showed significant improvement after six months when
fed a gluten-free diet. (8) Naldi et al and Kavli et al noted in
epidemiological studies that increased intake of fresh fruits and
vegetables is linked with a decreased prevalence of psoriasis. (20,21)
Pagano published a book for the general public (partially based on Edgar
Cayce's readings) describing a diet composed primarily of fresh fruits
and vegetables, with small amounts of fish, fowl, and lamb. (22)
The present study explores the effectiveness of a treatment protocol,
based on Edgar Cayce's readings on psoriasis, that includes a dietary
regimen, herbal supplements, and addressing intestinal permeability.
Several lines of research support this systemic approach. Comorbidity
studies link intestinal pathology with a variety of skin conditions,
including psoriasis. (23-25)
Although there is evidence in cases of psoriasis for structural
abnormalities in the intestine, (26-28) the data specifically linking
intestinal permeability to psoriasis is mixed. Humbert et al compared
intestinal permeability of psoriasis patients with healthy controls
using the [sup.51]Cr-labeled EDTA absorption test, and found the
psoriasis group had significantly increased bowel permeability. (29) On
the other hand, Hamilton et al used the cellobiose/mannitol differential
sugar absorption test, and although these latter researchers found an
abnormal recovery ratio in seven of 29 psoriasis patients, they
concluded this rate was similar to a control population. (30) The
present study continues to explore this question.
The concept of increased intestinal permeability as a cause of psoriasis
is based on the premise that substances from the diet larger than those
normally absorbed can enter the circulation and initiate an immune
system response resulting in psoriatic lesions. Until the early 20th
century, "autointoxication" was widely accepted and various therapies
(such as colonic irrigation) were commonly used for a variety of
systemic disorders. Unsupported by scientific evidence, autointoxication
tell out of favor several decades ago. (31) However, the growing body of
information linking intestinal disease, excessive intestinal
permeability, and systemic illness has revived the theory. (32,33) The
concept of autointoxication gains support from several case studies
suggesting hemodialysis and peritoneal dialysis are effective in the
treatment of psoriasis. (34-37)
The conceptual basis of the present study is derived from the systems
approach of Edgar Cayce, as described by Landsford and McMillin et al.
In essence, the model focuses on excessive intestinal permeability (or
the "leaky gut syndrome") as a primary factor in the pathogenesis of
psoriasis. (38,39) According to this theory, various factors cause the
walls of the small intestine to "thin" or become disturbed in some way
that allows "toxic" substances to be absorbed into circulation. These
substances eventually find their way into the superficial circulation
and lymphatics and are eliminated through the skin, producing the
plaques of psoriasis. (39) This study is based on a slightly different
hypothesis, in that the current researchers suggest it is the immune
system reacting to larger-than-normal substances absorbed by a
compromised intestinal tract actually causing the skin to react in much
the same way it does to common allergens. The approach in the present
study combines the dietary treatment approach of Edgar Cayce, based on
Meridian Institute publications, with evaluation of psoriasis symptoms
and the measurement of intestinal permeability.
Subjects
This study was undertaken at the Meridian Institute, Virginia Beach,
Virginia, involving five participants recruited by a notice in Venture
Inward magazine. The criteria for inclusion included a medical diagnosis
of psoriasis and the ability to travel to the clinic for required
appointments; there were no exclusionary criteria. Some subjects were
using treatments before and during the study (noted specifically under
each case), and the protocol did not require them to change treatments.
Accordingly, no one changed a previous course of treatment during the
study, but simply added the study protocol. Subjects consisted of five
patients diagnosed with chronic plaque psoriasis (two men and three
women: mean age 52 years: range 40-68 years).
Methods and Materials
Each subject attended a 10-day, live-in program during which time bowel
permeability and psoriasis symptoms were assessed by a dermatologist,
and the subjects were trained to carry out the therapy protocol at home
for six months. The dietary protocol included a diet rich in
alkaline-forming fresh fruits and vegetables (Table 1) and daily use of
saffron tea and slippery elm bark water. The raw herbs, American yellow
saffron (Carthamus tinctorius) and slippery elm bark (Ulmus fulva) were
packaged by and obtained from The Heritage Store, Virginia Beach, and
prepared according to instructions, as follows:
* Saffron tea: 4 ounces of boiling water poured over a pinch of saffron
and steeped for 15 minutes, consumed one-half hour before a meal.
* Slippery elm water: a pinch of raw herb placed in a glass of cool
water, allowed to sit for five minutes, stirred, and consumed without
straining.
An initial cleansing included external castor oil packs applied over the
abdomen to improve elimination via the bowel, (40) colon hydrotherapy
(colonic irrigations) to further assist with elimination, and spinal
adjustments for each subject during the 10-day live-in program. Subjects
also received instruction on maintaining regular use of castor oil
packs, and were encouraged to receive further colonic irrigations and
spinal adjustments (based on availability of local clinicians).
Participants were advised on the importance of regular elimination and
were encouraged to maintain regularity with the high fruit and vegetable
diet (Table 1). Emotional counseling was also encouraged, with special
emphasis on developing a positive attitude toward healing and viewing
physical healing as part of a holistic process. The participants
returned home, applied the protocol on a daily basis, and kept daily log
sheets for six months.
Outcome Measures
The following four measurable outcomes were administered immediately
before and after six months of therapy: Psoriasis Area and Severity
Index (PASI) scores assessed by a medical doctor, Psoriasis Severity
Scale (PSS) self-assessed by subjects, (41) before/after photograph
comparisons by a medical doctor, and the lactulose/mannitol test of
intestinal permeability.
The PASI standardized evaluation is a single number calculation
representing severity of symptoms and area of coverage. (1) PASI scores
range from 0-72, with lower scores indicating less severe symptoms
and/or a smaller area of coverage. The PSS is a six-item subjective
evaluation of psoriasis symptoms by the patient, (41) which is
significantly correlated with objective measurement by a physician. (42)
A lower score indicates less severe symptoms. The lactulose/mannitol
test of intestinal permeability involves drinking a solution of two
sugars; the normal bowel is relatively impermeable to lactulose, but
relatively permeable to mannitol. A high lactulose/mannitol ratio in the
urine indicates excess leakage of lactulose across the intestinal wall.
This test is sensitive, low cost, simple to perform, and has the
advantage of a simple enzyme assay. (43) It has been shown to have good
repeatability and to be a reliable intestinal permeability test for
sugars. (44) After an overnight fast, the participants voided a pre-test
urine sample and then ingested the test solution provided by Great
Smokies Laboratory (63 Zillicoa Street, Asheville, NC 28801). Urine was
collected at the Meridian Institute for six hours in polyethylene
bottles. Intake of at least 100 mL of water each hour was encouraged to
ensure adequate urine production; food was allowed after four hours. The
analysis was performed by Great Smokies Laboratory.
Results
Five participants returned for the six-month assessment and all showed
improvement in PASI and PSS scores, and decreased intestinal
permeability. The mean PASI score dropped from 18.2 to 8.7; the mean PSS
score dropped from 14.6 to 5.4; and the mean lactulose/mannitol ratio
dropped from 0.066 to 0.026. Because statistical analysis is not
meaningful with five participants, each is addressed as a separate case
study with the results for each participant summarized in Table 2.
Case 1
Case 1 was a 40-year-old woman exhibiting mild psoriasis on hands,
elbows, and feet beginning in 1991. She used no other treatments,
systemic or topical, throughout the course of the study. In the
before/after pictures, Case 1 demonstrated major improvement. Her most
prominent symptom--rough, red areas on her hands and elbows--were
completely cleared. Psoriasis was still present on her feet. She also
showed improvement on the two measures of psoriasis symptoms (Table 2).
Her lactulose/mannitol ratio, which had been high (0.134) at the
beginning, was normal (0.038) after six months. Regarding compliance
with the protocol, Case 1 showed excellent compliance with the diet and
the teas, good compliance with the colonics, and minimal compliance with
the adjustments and castor oil packs.
Case 2
Case 2 was a 68-year-old man exhibiting moderate-to-severe psoriasis,
initially presenting in 1985. Case 2 used no medications during the
study. Photography showed large areas of reddened skin, with prominent
white scaly areas. The before/after pictures of Case 2 revealed
substantial healing. Most notable was the complete disappearance of the
white scales on his back, although there were still large red areas. He
also showed improvement on the two measures of psoriasis symptoms (Table
21). His lactulose/mannitol ratio, which had been high (0.084) at the
beginning of treatment, was normal (0.022) after six months. Case 2 had
excellent compliance with the diet, teas, and adjustments; good
compliance with the colonics; and minimal compliance with the castor oil
packs.
Case 3
Case 3 was a 47-year-old woman with moderate psoriasis beginning in
1997. She also presented with general health problems, specifically
hepatitis C. She was overweight and noted her diet was poor and she
craved and consumed many sweets. Case 3 used Clobetasol propionate
(topical for scalp), Diprolene cream, Gingko, occasional UV light, and
Allegra for allergies, both prior to and during the study. Improvement
was difficult to detect in the before/after photographs. Her before
photos revealed some psoriasis, while her after photos revealed no
psoriasis. At the start of the study, she had moderate psoriasis over
half her body, specifically her trunk and lower extremities, and slight
psoriasis on the head and upper extremities. She showed substantial
improvement on the two measures of psoriasis symptoms (Table 2). Her
lactulose/mannitol ratio, which was in the normal range (0.034) at the
onset of the study, was still normal, but lower (0.019), after six
months. Case 3 also noted much improvement in her hepatitis C condition,
although no medical record of the improvement was provided. Case 3
demonstrated excellent compliance with the castor oil packs; good
compliance with the diet and the teas; and minimal compliance with the
adjustments and colonics.
Case 4
Case 4 was a 44-year-old man, demonstrating mild psoriasis on scalp and
fingers that had begun when he was five years old. He also complained of
arthritis (type not specified). Prior to and during the study, Case 4
used Lipitor- for high triglycerides, Dovonex ointment, and one aspirin
daily as a blood thinner. In the before/after pictures, change was
difficult to perceive as his symptoms were barely visible. He showed
improvement on the two measures of psoriasis symptoms (Table 2). The
PASI score was zero, indicating no psoriasis symptoms at follow-up. His
lactulose/mannitol ratio, which was in the normal range (0.047) at the
beginning, was still normal, but lower (0.024), after six months. Case 4
maintained excellent compliance with the teas; fair compliance with the
diet; and minimal compliance with the colonics, adjustments, and castor
oil packs.
Case 5
Case 5 was a 59-year-old woman with severe psoriasis covering 60 percent
of her body, initially presenting in 1953. Her psoriasis symptoms at the
onset of the study were the most severe in the group. She also reported
problems with osteoarthritis and abdominal bloating, especially at
night. Case 5 reported using a steroid cream (type not specified)
topically. In the before/after photographs, Case 5 had clearly visible
improvement. Her most prominent symptom, red patches covering much of
her back, had diminished in size and redness. She also showed
improvement on the two measures of psoriasis symptoms (Table 2). Her
lactulose/mannitol ratio was at the low end of the normal range (0.029)
at the beginning and remained low (0.026) after six months. Regarding
compliance with the protocol, Case 5 had excellent compliance with the
diet, teas, and castor oil packs: and minimal compliance with the
adjustments and colonics.
Discussion
The five psoriasis cases, ranging from mild to severe at the beginning
of the study, improved on all measured outcomes over a six-month period
when measured by the PASI criteria, the PSS, and the lactulose/mannitol
test of intestinal permeability. These results suggest a treatment
regimen based on Edgar Cayce's readings on diet and herbal teas or a
related type of medical nutritional therapy may be an effective
alternative or complementary (not exclusionary of conventional
intervention) treatment for psoriasis. This study used a protocol
including diet (high in fresh fruits and vegetables, small amounts of
protein from fish and fowl, fiber supplements, olive oil, and avoidance
of red meat, processed foods, and refined carbohydrates) and herbal teas.
Two of the five participants had abnormally high permeability; the
intestinal permeability of all five decreased. The most difficult aspect
of the treatment protocol for most participants was compliance with
dietary restrictions. When, for various reasons such as travel, they did
not adhere to the diet, the psoriasis symptoms partially returned,
confirming the importance of this aspect of the treatment approach.
Psoriasis is characterized by epidermal hyperproliferation. (1) In
normal skin, the cells of the epidermis continually divide and move to
the surface of the skin, and are then sloughed off. This process
normally takes approximately 28 days. In psoriatic skin, however, this
process is accelerated and occurs in four days, with a 30-fold increase
in new epidermal cells. The skin is thicker and the cells are less
mature, resulting in scaling. Psoriatic skin is red and inflamed due to
dilation of capillaries in the dermal layer surrounded by white blood
cells. (45) The biochemical basis for the control of cell proliferation
is via a delicate balance between two signaling compounds, cyclic
adenosine monophosphate (cAMP) and cyclic guanosine monophosphate
(cGMP). Increased levels of cAMP and decreased levels of cGMP are
associated with enhanced cell maturation and reduced cell proliferation,
(46) advantages in the care and management of psoriasis. Compared to
unaffected skin, psoriatic plaques have been shown to contain decreased
levels of cAMP and increased levels of cGMP, (46) which may contribute
to epidermal hyperproliferation.
The improvement of psoriasis symptoms in all five subjects may have been
due to lowering overall protein intake. Because epithelial proliferation
relies on protein, reducing dietary protein may limit the potential
amount of epithelial replication. Also, excess dietary protein may lead
to incomplete protein digestion, leading to the formation of toxic
polyamines as bowel bacteria break down the superfluous polypeptides.
(47-79) Polyamines are elevated in the urine and skin of individuals
with psoriasis, providing support for the concept of autointoxication.
(50,51) Polyamines then inhibit the production of cAMP, leading to
increased cell proliferation. (47-49) Although polyamine and cAMP levels
were not measured in this study, the authors suggest that by lowering
protein intake, polyamine levels in the subjects may have been reduced,
resulting in higher levels of cAMP, decreased cell proliferation, and
ultimately, symptom improvement.
In addition, allergic reactions often occur due to dietary proteins. If
a compromised gastrointestinal tract allows protein substances larger
than amino acids to pass into the bloodstream, then the body may react
in an allergic-type fashion, resulting in one of the symptoms of
allergies--a skin manifestation. Since allergic reactions are
inflammatory responses involving the immune system, it is interesting to
note psoriasis is an inflammatory condition that appears to benefit from
newer immune therapies. The fact that a gluten-free diet improves the
condition of some people with psoriasis (8) indicates the
gastrointestinal tract may be involved.
Another important aspect of this diet was elimination of alcohol.
Consumption of alcohol is a known trigger of psoriasis flare-ups.
Although the mechanism is unknown, possible reasons for an alcohol
trigger include stress on the liver or alcohol-induced increase in gut
permeability. The fact that dialysis is effective in the treatment of
psoriasis (34-37) indicates there may be substances in the blood,
removed through dialysis, that can exacerbate psoriasis, such as
endotoxins, immune complexes, or other substances related to the body's
immune reaction. The authors believe this elusive mechanism involving
the gastrointestinal tract, liver, and bloodstream holds the key to the
core cause, and therefore effective treatment, for psoriasis. If this is
the case, topical treatments or systemic anti-inflammatory medications
are doing little to treat the cause of psoriasis. Perhaps this is why so
few psoriasis treatments are successful.
Generous consumption of fresh fruits and vegetables was also a
significant feature of the diet of the test subjects. The resulting
boost in consumption of fiber may have aided in diminishing psoriasis
symptoms. Both bacteria and yeasts inhabit the bowels and produce
byproducts that may be carried away by fiber components (52) for
elimination. Further hypothesizing the autointoxication theory, some of
these byproducts from the intestine, such as endotoxins, may enter the
systemic circulation due to intestinal hyperpermeability, leading to
higher skin cGMP levels and the resulting rapid skin cell proliferation
seen in psoriatics. (52) By increasing daily fiber intake it is possible
to decrease the absorption of endotoxins, which could reduce cGMP levels
in skin. Some researchers suggest a high-fiber, vegetarian diet also
supports a healthy balance of normal intestinal microflora. Conversely,
a diet high in animal protein encourages the growth of the
microorganisms that produce endotoxins. (53,54)
Another aspect of diet that has been researched among psoriasis patients
is the use of omega-3 fatty acid supplementation. Overall, fish oil
consumption results in mild-to-modest improvement in psoriatic symptoms,
(66,55-57) although some studies show fish oil was not superior to corn
oil (58) or olive oil. (59) Psoriatic plaques have been shown to
increase arachidonic acid and leukotriene levels (60) compared to normal
skin. Arachidonic acid is an omega-6 fatty acid contained in animal
products that, when metabolized, produces potent inflammatory
leukotrienes. Leukotrienes are promoters of increased cGMP levels.
(16,60) On the other hand, eicosapentaenoic acid (EPA), one of the
active components offish oil, serves as a substrate for the production
of anti-inflammatory prostaglandins. (61) In most of the studies
employing fish oil supplementation, the diets of the subjects involved
were not altered (55,57,62) and results have shown only slight
improvement. This may have been due to the fact that study subjects
continued to eat red meat; hence, arachidonic acid was in competition
with the EPA. In the present study, however, all meat from sources other
than fish, fowl, and lamb were excluded. Although arachidonic acid
levels were not measured in this study, decreasing the intake of red
meat and therefore arachidonic acid, and substituting protein from fish,
consequently increasing EPA levels, may have contributed to decreased
levels of leukotrienes, cGMP, and cellular proliferation.
Supplementation with certain herbal teas can improve inflammatory
conditions. Yellow saffron (Carthamus tinctorius) has been shown to
possess anti-inflammatory (63,64) and immune-modulating properties).
(65) Slippery elm (Ulmus fulva) is an herb used traditionally for
digestive difficulties, stomach and intestinal ulcers, and colitis. It
is a demulcent, high in mucilage, noted for its ability to soothe or
protect irritated mucous membranes, and perhaps acts as an inflammatory
agent. (66)
In all five cases in this study, intestinal permeability improved during
the course of treatment according to the lactulose/mannitol test (Table
2). However, interpretation of the role of permeability is complicated
by the fact that in only two cases was initial permeability outside the
norms provided by the testing laboratory. It is possible the dietary
regimen employed in this study reduced intestinal permeability to
previously present dietary compounds, despite the fact permeability was
in the normal range in several cases. Further research could be directed
toward analysis of skin cAMP, cGMP, and polyamine levels, as well as
intestinal permeability in response to the Edgar Cayce diet.
These preliminary results are interesting and further research is
warranted in order to determine if diet can truly play a significant
role in the observed reduction of psoriatic symptoms. The study should
employ a specific "psoriasis diet" combined with a diet diary prior,
during, and after the study to ensure compliance and to allow dietary
analysis of total nutrients. Measurable outcomes should be evaluated
again four weeks after the diet's cessation to determine the frequency
and severity of relapse.
Table 1. Dietary Regimen Employed in the Study
Food Type Include Avoid
Meat Fish, fowl, lamb Red meat, fried meat,
high fat meats
Fruit All fruits Combinations of citrus
fruits and cereals at
the same time
Vegetables All vegetables except Tomatoes (and their
nightshade family (see derivatives), white
avoid) potatoes, eggplant,
peppers (except the
seasoning black pepper),
paprika
Starch/ Whole grain bread and High sugar foods, high
grains/ cereals starch foods,
cereal combinations of two or
more starchy foods at
the same time
Dairy/Fats Limited amounts of nonfat Salted, processed, or
or low-fat dairy products imitation butter;
hydrogenated fats
such as margarine
Dessert Fruit High fat foods
Beverages Water, fruit and High fructose and/or
vegetable juices, artificial drinks;
saffron tea alcoholic beverages
Nuts All nuts None
Supplements Saffron tea and slippery Slippery elm water is
elm water (daily) contraindicated for
pregnant women
Table 2. Individual Values for Bowel Permeability, PASI Scores,
and PSS Scores for Study Participants
Case Number PASI Scores **
Pre-therapy Post-therapy
1 7.0 4.8
2 30.7 18.4
3 14.0 0.7
4 2.3 0.0
5 37.0 19.8
Mean 18.2 8.7
[+ or -] [+ or -] [+ or -]
SD 15.0 9.7
Case Number MPSS Scores **
Pre-therapy Post-therapy
1 7.0 6.0
2 14.0 5.0
3 21.0 3.0
4 7.0 1.0
5 24.0 12.0
Mean 114.6 5.4
[+ or -] [+ or -] [+ or -]
SD 7.8 4.2
Case Number Lactulose/Mannitol Ratio
Pre-therapy Post-therapy
1 0.134 * 0.038
2 0.084 * 0.022
3 0.034 0.019
4 0.047 0.024
5 0.029 0.026
Mean 0.006 0.026
[+ or -] [+ or -] [+ or -]
SD 0.044 0.007
* Outside normal range for lactulose/mannitol ratio of 0.01-0.06.
** For PASI and PSS, higher scores indicate more severe symptoms;
all patients showed a decrease in scores.
References
(1.) Feldman SR. A quantitative definition of severe psoriasis for use
in clinical trials. J Dermatolog Treat 2004;15:27-29.
(2.) Zachariae R, Zachariae H, Blomqvist K, et al. Self-reported stress
reactivity and psoriasis-related stress of Nordic psoriasis sufferers. J
Eur Acad Dermatol Venereol 2004;18:27-36.
(3.) Tristani-Firouzi P, Krueger GG. Efficacy and safety of treatment
modalities for psoriasis. Cutis 1998;61:11-21.
(4.) Vincek V, Jacob SE, Nassiri M, et al. Infliximab monotherapy in
psoriasis: a case of rapid clinical and histological response. Int J
Dermatol 2004;43:303-308.
(5.) Ortonne JP, Prinz JC. Alefacept: a novel and selective biologic
agent for the treatment of chronic plaque psoriasis. Eur J Dermatol
2004;14:41-45.
(6.) Balasubramaniam P, Stevenson O, Berth-Jones J. Fumaric acid esters
in severe psoriasis, including experience of use in combination with
other systemic modalites. Br J Dermatol 2004;150:741-746.
(7.) Singe F, Weinberg JM. Oral tazarotene and oral pimecrolimus: novel
oral therapies in development for psoriasis. J Drugs Dermatol
2004;3:141-143.
(8.) Michaelsson G, Gerden B, Hagforsen E, et al. Psoriasis patients
with antibodies to gliadin can be improved by a gluten-free diet. Br J
Dermatol 2000; 142:44-51.
(9.) de Vos RJ, de Boer WA, Haas FD. Is there a relationship between
psoriasis and coeliac disease? J Intern Med 1995;237:118.
(10.) Lithell H, Bruce A, Gustafsson IB, et al. A fasting and vegetarian
diet treatment trial on chronic inflammatory disorders. Acre Derm
Venereol 1983;63:397-403.
(11.) Newborg B. Disappearance of psoriatic lesions on the Rice Diet. N
C Med J 1986;47:253-255.
(12.) Kojima T, Terano T, Tanabe E, et al. Long-term administration of
highly purified eicosapentaenoic acid provides improvement of psoriasis.
Dermatologica 1991;182:225-230.
(13.) Perez A, Chen TC, Turner A, et al. Efficacy and safety of topical
calcitriol (1,25-dihydroxyvitamin D3) for the treatment of psoriasis. Br
J Dermatol 1996;134:238-246.
(14.) Portnoy B. Psoriasis treated with low tryptophan diet. Br J
Dermatol 1969;81:389.
(15.) Soter NA, Wilkinson DS, Fitzpatrick TB. Clinical dermatology
(third of three parts). N Engl J Med 1973;289:296-302.
(16.) Kragballe K, Fogh K. A low-fat diet supplemented with dietary fish
oil (Max-EPA) results in improvement of psoriasis and in formation of
leukotriene B5. Acta Derm Venereol 1989;69:23-28.
(17.) Roe DA. Nutrient requirements in psoriasis. N Y State J Med
1965;65:1319-1326.
(18.) Clemmensen OJ, Siggaard-Andersen J, Worm AM, et al. Psoriatic
arthritis treated with oral zinc sulphate. Br J Dermatol 1980;103:411-415.
(19.) Parodi A, Priano L, Rebora A. Chronic zinc deficiency in a patient
with psoriasis and alcoholic liver cirrhosis. Int J Dermatol 1991;30:45-47.
(20.) Naldi L, Parazzini F, Peli L, et al. Dietary factors and the risk
of psoriasis. Results of an Italian case-control study. Br J Dermatol
1996;134:101-106.
(21.) Kavli G, Forde OH, Arnesen E, Stenvold SE. Psoriasis: familial
predisposition and environmental factors. Br Med J (Clin Res Ed)
1985;291:999-1000.
(22.) Pagano J. Healing Psoriasis: The Natural Alternative. Englewood
Cliffs, NJ: The Pagano Organization, Inc.; 1991.
(23.) D'Amico E, Palazzi C, Capani F. Remission of psoriatic arthritis
alter porto-caval anastomosis in a patient with primary biliary
cirrhosis. J Rheumatol 1999;26:236.
(24.) Menzel I, Holzmann H. Reflections on seborrheic scalp eczema and
psoriasis capillitii in relation to intestinal mycoses. Z Hautkr
1986;61:451-454. [Article in German]
(25.) Yates VM, Watkinson G, Kelman A. Further evidence for an
association between psoriasis, Crohn's disease and ulcerative colitis.
Br J Dermatol 1982;106:323-330.
(26.) Barry RE, Salmon PR, Read AE, Warin RP. Mucosal architecture of
the small bowel in cases of psoriasis. Gut 1971;12:873-877.
(27.) Michaelsson G, Kraaz W, Gerden B, et al. Increased lymphocyte
infiltration in duodenal mucosa from patients with psoriasis and serum
IgA antibodies to gliadin. Br J Dermatol 1995;133:896-904.
(28.) Michaelsson G, Kraaz W, Hagforsen E, et al. Psoriasis patients
have highly increased numbers of tryptase-positive mast cells in the
duodenal stroma. Br J Dermatol 1997;136:866-870.
(29.) Humbert P, Bidet A, Treffel P, et al. Intestinal permeability in
patients with psoriasis. J Dermatol Sci 1991;2:324-326.
(30.) Hamilton I, Fairris GM, Rothwell J, et al. Small intestinal
permeability in dermatological disease. QJ Med 1985;56:559-567.
(31.) Ernst E. Colonic irrigation and the theory of autointoxication: a
triumph of ignorance over science. J Clin Gastroenterol 1997;24:196-198.
(32.) Swank GM, Deitch EA. Role of the gut in multiple organ failure:
bacterial translocation and permeability changes. World J Surg
1996;20:411-417.
(33.) Person JR, Bernhard JD. Autointoxication revisited. J Am Acad
Dermatol 1986;15:559-563.
(34.) Glinski W, Jablonska S, Imiela J, et al. Continuous peritoneal
dialysis for treatment of psoriasis. I. Depletion of PMNL as a possible
factor for clearing of psoriatic lesions. Arch Dermatol Res
1979;265:337-341.
(35.) McEvoy J, Kelly AM. Psoriatic clearance during haemodialysis.
Ulster Med J 1976;45:76-78.
(36.) Muston HL, Conceicao S. Remission of psoriasis during
haemodialysis. Br Med J 1978;1:480-481.
(37.) Twardowski ZJ. Abatement of psoriasis and repeated dialysis. Ann
Intern Med 1977;86:509-510.
(38.) Landsford FD. Psoriasis. In: McGarey WA, ed. Physicians Reference
Notebook. Virginia Beach, VA: A.R.E. Press: 1983:303-309.
(39.) Mcmillin DL, Richards DG, Mein EA, Nelson CD. Systemic aspects of
psoriasis. An integrative model based on intestinal etiology. Integr Med
2000;2:105-113.
(40.) Mein E. Keys to Health. New York, NY: Harper & Row Publishers,
Inc.; 1989.
(41.) Gottlieb AB, Kang S, Linden KG, et al. Evaluation of safety and
clinical activity of multiple doses of the anti-CD80 monoclonal
antibody, galiximab, in patients with moderate to severe plaque
psoriasis. Clin Immunol 2004;111:28-37.
(42.) McHenry PM, Doherty VR. Psoriasis: an audit of patients' views on
the disease and its treatment. Br J Dermatol 1992:127:13-17.
(43.) Juby LD, Rothwell J, Axon AT. Lactulose/ mannitol test: an ideal
screen for celiac disease. Gastroenterology 1989;96:79-85.
(44.) van Elburg RM, Uil JJ, Kokke FT, et al. Repeatability of the
sugar-absorption test, using lactulose and mannitol, for measuring
intestinal permeability for sugars. J Pediatr Gastroenterol Nutr
1995;20:184-188.
(45.) Klaber M. Common Skin Conditions in General Practice. Surrey,
United Kingdom: Reed Business Publishing; 1991.
(46.) Voorhees JJ, Duell EA. Imbalanced cyclic AMP-cyclic GMP levels in
psoriasis. Adv Cyclic Nucleotide Res 1975;5:735-758.
(47.) Proctor MS, Wilkinson DI, Orenberg EK, Farber EM. Lowered
cutaneous and urinary levels of polyamines with clinical improvement in
treated psoriasis. Arch Dermatol 1979;115:945-949.
(48.) Voorhees JJ. Polyamines and psoriasis. Arch Dermatol 1979;115:943-944.
(49.) McDonald CJ. Polyamines in psoriasis. J Invest Dermatol
1983;81:385-387.
(50.) Kaplan RP, Russell DH, Lowe NJ. Etretinate therapy for psoriasis:
clinical responses, remission times, epidermal DNA and polyamine
responses. J Am Acad Dermatol 1983;8:95-102.
(51.) Grekin RC, Ellis CN, Goldstein NG, et al. Decreased urinary
polyamines in patients with psoriasis treated with etretinate. J Invest
Dermatol 1983;80:181-184.
(52.) Rosenberg EW, Belew PW. Microbial factors in psoriasis. Arch
Dermatol 1982;118:143-144.
(53.) Hao WL, Lee YK. Microflora of the gastrointestinal tract: a
review. Methods Mol Biol 2004;268:491-502.
(54.) Kidd PM. Multiple sclerosis, an autoimmune inflammatory disease:
prospects for its integrative management. Altern Med Rev 2001;6:540-566.
(55.) Bittiner SB, Tucker WF, Cartwright I, Bleehen SS. A double-blind,
randomised, placebo-controlled trial of fish oil in psoriasis. Lancet
1988;1:378-380.
(56.) Collier PM, Payne CR. The dietary effect of oily fish consumption
on psoriasis. Br J Dermatol 1996;135:858.
(57.) Maurice PD, Allen BR, Barkley AS, et al. The effects of dietary
supplementation with fish oil in patients with psoriasis. Br J Dermatol
1987;117:599-606.
(58.) Soyland E, Funk J, Rajka G, et al. Dietary supplementation with
very long-chain n-3 fatty acids in patients with atopic dermatitis. A
double-blind multicentre study. Br J Dermatol 1994;130:757-764.
(59.) Bjorneboe A, Smith AK, Bjorneboe GE, et al. Effect of dietary
supplementation with n-3 fatty acids on clinical manifestations of
psoriasis. Br J Dermatol 1988;118:77-83.
(60.) Voorhees JJ. Leukotrienes and other lipoxygenase products in the
pathogenesis and therapy of psoriasis and other dermatoses. Arch
Dermatol 1983;119:541-547.
(61.) Adam O. Dietary fatty acids and immune reactions in synovial
tissue. Eur J Med Res 2003;8:381-387.
(62.) Grimminger F, Mayser P, Papavassilis C, et al. A double-blind,
randomized, placebo-controlled trial of n-3 fatty acid based lipid
infusion in acute, extended guttate psoriasis. Rapid improvement of
clinical manifestations and changes in neutrophil leukotriene profile.
Clin Investig 1993;71:634-643.
(63.) Xu SX. Anti-inflammatory active constituents of Carthamus
tinctorius (2). Zhong Yao Tong Bao 1986;11:42-44. [Article in Chinese]
(64.) Akihisa T, Yasukawa K, Oinuma H, et al. Triterpene alcohols from
the flowers of Compositae and their anti-inflammatory effects.
Phytochemistry 1996;43:1255-1260.
(65.) Lu ZW, Liu F, Hu J, et al. Suppressive effects of safflower yellow
on immune functions. Zhongguo Yao Li Xue Bao 1991;12:537-542.
(66.) Langmead L, Dawson C, Hawkins C, et al. Antioxidant effects of
herbal therapies used by patients with inflammatory bowel disease: an in
vitro study. Aliment Pharmacol Ther 2002;16:197-205.

Re: [rheumatic] My Jacob is Flaring and I need help

2008-11-23 17:50:51

Hi Jacob's mom. My heart breaks when I hear that children are in pain. He
sounds very brave. The first thing I would do is take him to a pediatric
cardiologist if he is having heart symptoms. Heart damage can be ruled out with
several tests. Next, check with a pediatric
pulmonologist and then check with a pediatrict Rheumatologist. I don't know
where in the country you live, but if you go to the roadback foundation bulletin
board, someone will direct you. Ask! there are people there with sick
children. I don't know if they put children on Minocin. I know they put
teenagers on it for acne. Check with the pharmaceutical company Triax and see
what the rules are for dosing in children. Triax is the company that
manufactures the antibiotic. Have his B/P and P checked when he is complaining
about his heart. That is my scariest symptom. I chew Benicar for that and it
releaves the achiness, chest pain and pressure in my heart. Benicar is an ACE
inhibitor. Check it out! Dolores & Mike
dmrpd <dmdailey@...
Hi guys, I haven't written in a long while because Jacob (my 7 y.o.
son) was doing very well. He's having some issues lately and I took
him to see Doc Sinnott again in late November and he had the series,
however he is still in pain, sometimes pretty bad. I am reluctant
to take him to the rheumatologist, and I thought I would check with
you all and list some of his symptoms, old and new, and see if maybe
someone can help me figure out what to do. I am ultimately going to
have to go see someone, I can barely stand to see him in so much
pain.
Old symptoms:
Finger knuckle swollen at first joint next to hand
He has stiffness in feet and ankles, swelling and pain
Stiffness in knees, swelling and pain
Toe pain
Hand and elbow pain
Occasional chest pain
eczema like patch on penis which does not hurt or itch
New symptoms:
Back pain
More frequent chest pain (he says he thinks it's his heart)
Neck pain
Stomach pain
Shoulder pain
Headaches
Pain in arms and thighs
Two new finger knuckles swollen big in middle joint
Sometimes these new symptoms will cause him to grimace and cry in
pain. I give him naprosyn, but he usually declines saying the pain
will subside. He takes eyrthomycin (is that spelling right?) daily,
probiotics occasionally, supplements, apple cider vinegar (he loves
it!) He still has the old symptoms, but it seems that the new ones
hurt him more. He also tries to use the pain as a reason to stay
home with me and play video games instead of going to school, but I
think (hope) I have it down pretty good to know when he truly is in
need of a day of rest, which is rare but does occur.
I have a bit of "rheumatiz" as they used to say, but I have never
been completely crippled by it, as Jacob was at 16 months. As bad
as the prednisone, methotrexate and naprosyn are, he did get back to
walking after being on them. I took him off the prednisone after
several months and off the methotrexate when his fingernails started
turning black and falling off when he was about 4, that was our
first trip to Ida Grove. It worked wonderfully, now, less than two
months since our last trip, he wants to go back for another
treatment.
You are all in my prayers, and I thank you for all your advice.
Diane in St. Louis

Vit D

2008-11-23 16:58:52

Hi Id like to know what people think about Vit D. I know the MP says NO vit D,
no sun etc. but now Im reading all this stuff saying how most people are
difficient of vit D. So Im not sure about to take vit D or not. Thanks. Kathy

Re: [PsoriaticArthritis] I don't want to play this game anymore

2008-11-23 11:22:26

Hi Jane,
I know how you feel. Sometimes you just want to take your ball and go home.
I can tell you all the cliche lines of keeping your head up, but sometimes I
think we need to take a good moment to vent and sulk. I think we deserve it
after having to put up with this nonsense.
Hang in there girl!
Best wishes,
Jen
janekarsten <janekarsten@...
Hi everyone,
Well, I had the first visit of the year with the rheumy yesterday,
and how I wish I'd never even heard of damn autoimmune diseases.
Their answer to my sleeping difficulty, flu-like achiness, headaches,
muscle spasms, etc., is (of course) fibromyalgia. I don't want this.
They told me to get more exercise, and see my family physician for an
anti-depressant prescription.
They also gave me a script for Evoxac for dry mouth. Do any of you
take this? I'm wondering how well it works.
On the positive side, my bp was 112/65, and when I checked on the
blood work my family dr. did, found my cholsterol down to 146, and
the triglycerides at 98 (were 640 when last checked in September).
However, my hemoglobin, hamatocrit and rbc are still in the below-
normal range.
I'm so sick and tired of all of this. I'm barely sleeping, and when I
do I'm as tired as if I didn't. I blame the overwhelming fatigue for
the mistakes I've been making at work, and now the screw-ups with
paperwork for my husband's business. Does this ever end??? I just
don't want to play this game anymore....
warm blessings,
jane

Re: [rheumatic] Fwd: Fw: Social Security Change for 2008

2008-11-22 23:47:14

When you send out a mailing showing all those
addresses we end up getting a lot of spam mail because
some enterprising person sells our addresses. Please
do not take such liberties with my address.
Thankd You
Denise in Oregon

SHAR, immune system, cancer

2008-11-22 18:50:09

Yes, the methotrexate definitely has an effect on the immune system.
That is the point. PA means parts of your immune system have
switched sides and are trying to hurt you, specifically your joints.
So instead of allowing you a normal life, your body wastes energy
fighting itself. Does attacking portions of your immune system
increase your chances of relapse with cancer?? Good question. I
don't know. But I do know methotrexate in higher doses used to be a
mainstay of anti-cancer therapy, to actually kill the cancer cells.
The cancer cells (and the cells involved in PA) divide more often
than normal cells. During the division phase, they are more
susceptible to injury from stuff like radiation or methotrexate. So
if you hit a normal and bad cell mixture (you) with chemo or
radiation, the normal cells come out ahead. Enbrel targets the T4
killer cells that are involved in initiating the inflammation that
damages joints and skin, supposedly more specifically than
methotrexate.
Here science begins to thin out and philosophy begins to dominate.
No one believes getting psoriasis or PA is good for you. So is the
risk of the meds worth the results? So far, but I am only one
person, 54 years old. I think it's better to stay as healthy as
possible so I have a reserve capacity to fight off whatever happens
next. So I use methotrexate and Enbrel. No doubt 20-30 years from
now both these therapies will be considered antiquated and barbaric,
but it is the best available this month. I could argue that an
immune system that spends less time attacking healthy tissue allows
the immune system to do its job fighting cancer better, but I am not
aware of any scientific studies to support this theory.
Strangely, the choice really is up to you. If you were forced to
take the meds against your will, the outcome would be worse. Studies
on all kinds of diseases show that a positive attitude is worth a
significant portion of the outcome. So expect good results, enjoy,
and don't skip those follow-up tests.
Pete from Baltimore

I don't want to play this game anymore

2008-11-22 15:54:19

Hi everyone,
Well, I had the first visit of the year with the rheumy yesterday,
and how I wish I'd never even heard of damn autoimmune diseases.
Their answer to my sleeping difficulty, flu-like achiness, headaches,
muscle spasms, etc., is (of course) fibromyalgia. I don't want this.
They told me to get more exercise, and see my family physician for an
anti-depressant prescription.
They also gave me a script for Evoxac for dry mouth. Do any of you
take this? I'm wondering how well it works.
On the positive side, my bp was 112/65, and when I checked on the
blood work my family dr. did, found my cholsterol down to 146, and
the triglycerides at 98 (were 640 when last checked in September).
However, my hemoglobin, hamatocrit and rbc are still in the below-
normal range.
I'm so sick and tired of all of this. I'm barely sleeping, and when I
do I'm as tired as if I didn't. I blame the overwhelming fatigue for
the mistakes I've been making at work, and now the screw-ups with
paperwork for my husband's business. Does this ever end??? I just
don't want to play this game anymore....
warm blessings,
jane

Re: [rheumatic] Sandra

2008-11-22 12:17:11

Leonie, who said I didnt? What I was more worried about was the smell of
the diced garlic I was drinking every morning. That sure did help my lungs
and I figured I just didn't need to worry about anybody who was not paying my
bills. We all lived through it.
**************Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

Re: [PsoriaticArthritis] Enbrel Injection site Reaction

2008-11-22 06:28:59

Christine,
I had the same exact thing happen to me but my 5th injection was much
better...my 3rd injection was the worst it was the size of my fist...
I hope your next injection goes well...
Vickey
cjhulley <cjhulley@...
Hi. I recently started on Enbrel and after the first injection all
seemed to be just fine. A day after my second injection I had an
injection site reaction. The area turned red to the size of a large
egg, got warm to the touch and was slightly raised. Two days later,
my first injection site started showing the same symptoms. I thought
it was very odd that my first injection site didn't show any reaction
until over a week had passed. Now I've had four injections and the
3rd reacted the same as the 2nd. The 4th has been byfar the worst.
The redness is about the size of a tennisball with a lot of heat and
my leg feels hard and swollen underneath.
I know that there have been many comments about injection site
reactions, but what I was wondering is if anyone has had such a
severe reaction and if it has actually gotten better for you with
future injections.
Thanks for any input.
Christine

Welcome back

2008-11-21 19:18:25

Hi Kathy,
Welcome back! Hope everything went ok when you were away. Not too tired I
hope. lol
Take care,
Martin
[Editor's Note: Hi Martin! A business trip is always tiring and this one was
no exception, however, my colleagues in Florida were aware of my physical
limitations and every effort was made to keep my walking to a minimum. It was
good to get away from the New York winter for a few days so that helped balance
out the trip fatigue. Thanks for the nice welcome! Kathy F.]

Re: [PsoriaticArthritis] Fibro Query

2008-11-21 12:45:25

Hi Patty,
I don't have Fibro, at least I don't think I do, but I have had the problem
with the hand jumping while using the mouse, although not quite as badly as
you described.
Take care,
Martin(Just what you needed.................another jerk! lol)

Sandra

2008-11-21 09:48:58

sounds wonderful Sandra, except that I would fart like crazy all day ;)... I
hope Angela doesn't have that problem.
Leonie

RE: [rheumatic] Re:diet and RA For Angela

2008-11-20 22:53:39

Hi Angela,
A few years ago I found my ankles were tremendously swollen. They looked
like my Mother's and she is on a number of heart medications. I'm sure had
I gone to another doctor he would have put me on Lasix. I went to my Dr.,
he ran some tests, nothing was discovered. I did some reading and stumbled
on the idea that the swelling was caused by an inability of my body to
digest proteins (which made sense as I'd increased my protein intact and
reduced carbs). I found this info in the Balch's book, Prescription for
Nutritional Healing. I contacted my Dr. with my find and he immediately
recommended taking Wobenzym (three with each meal) or Inflazyme Forte. I
started taking the Wobenzym and my feet and ankles (and later I realized my
face and other body parts) went back to normal. What a thrill to see the
bones in my feet again! When I get lazy and don't take the Wobenzym for a
few days, the ankles begin to swell again.
I find the sweet tooth is a thing of the past once I found a good probiotic.
I still use a little organic sugar in my tea. As for bread, I find I can
tolerate the sprouted products. I use the Alvarado Bakery's reduced carb
flaxseed bread. I tolerate brown rice well. I'm not sure there is any one
answer so you have to experiment and keep track of what works for you. I
think I can tolerate grains however I have to be careful with proteins. I'm
limited to chicken, turkey and fish. But not daily. As for fruit, I avoid
certain fruits as they supposedly affect the thyroid (pears, peaches). I
find it best to rotate what I do eat; i.e., I only eat a food once every
four days. I wish I could help re breakfast. That's the hardest meal for
me to 'create.' Often I eat dinner for breakfast and then have cereal or
eggs at night for dinner!
I've seen a lot of responses today on this and they are all great! Thanks,
El
_____

Re: [PsoriaticArthritis] David and other responders-Unsure if it is PA

2008-11-20 19:13:46

I think you'll find that it's not a question of being bad for fertility but
rather a question of damaging the foetus.
Marian

Enbrel Injection site Reaction

2008-11-20 15:17:06

Hi. I recently started on Enbrel and after the first injection all
seemed to be just fine. A day after my second injection I had an
injection site reaction. The area turned red to the size of a large
egg, got warm to the touch and was slightly raised. Two days later,
my first injection site started showing the same symptoms. I thought
it was very odd that my first injection site didn't show any reaction
until over a week had passed. Now I've had four injections and the
3rd reacted the same as the 2nd. The 4th has been byfar the worst.
The redness is about the size of a tennisball with a lot of heat and
my leg feels hard and swollen underneath.
I know that there have been many comments about injection site
reactions, but what I was wondering is if anyone has had such a
severe reaction and if it has actually gotten better for you with
future injections.
Thanks for any input.
Christine

Heather /exercise KAREN/mattress

2008-11-20 10:34:40

Two topics
HEATHER- If you can only do one exercise, do range of motion. I
exercised for strength, and lost alot of range of motion in my
wrists and Lspine. Try stretching after pain meds and hot bath in
the AM. Don't get your body mad at you just before bed. The ache
from exercise is usually better than losing function, in my 30 years
of treatment. But if swelling gets worse (use a cloth tape measure),
that is too much exercise. Don't panic, the swelling can come and go.
Raising kids, I have four, the youngest is 16 now and almost a full-
time job. But I am a guy, parenting is different for guys.
KAREN/ re good mattress/ TRY memory foam, at least 2 inch, 3 inch
better. Try overstock.com with their 3 dollar shipping/ thats where
I got mine. If thats not thick enough, then get the mattress. The
add-on pad is cheaper to try and easier to install than a whole new
mattress. I have a piece in the back of my van I use at lunch time
and of course one on my bed. Great stuff!!
Pete from Baltimore

TIFFANY belated reply, back pain ER

2008-11-20 00:50:01

From pljera, Pete from Baltimore
You show up in the ER because you try to do too much. Of course,
what is too much varies with the PA ups and downs.
You asked what they did for me in the Er. Depends on who saw me. I
am sort of lucky since I often work at hospitals and know the
routines and a few docs and RNs and RTs. Usually I presented in Er
with inability to walk or sit up to drive home. Three (or 4?) times
it was an ambulance ride, at least 3 times I was working at that
hospital and was found on the floor. First, the ER treats the basic,
airway, breathing, and circulation. When I tighten up my back, I use
those muscles to crush a disc or two into the spinal column. Somehow
this translates into lower respirations and heart rate and low
oxygen in my blood. If I am concious, I tell them what's wrong and I
am sometimes right. I have difficulty staying awake when my o2 sats
drop into the 70s, so on a few occasions I was tested and treated
for overdose, since that was a good guess, (not supported by blood
test results later). Usually I get xrays, physical exam, blood
screening, initial monitoring, and eventually CAT or MRI.
The drugs given have been morphine, percocet, other pain
injectables, soma or other muscle relaxers, and bedrest which I
refuse as soon as possible. The docs often add a course of steroids
to reduce inflamation and swelling. Once I can move, I have a bed at
home, and a bathtub. I take home pain meds, and muscle relaxants,
and rest. The longest I stayed in bed was 2 weeks, but I often
return to work part-time after that.
My ER diagnosis is compounded by my previous PA therapy which was
aspirin to near toxic levels. In hindsight, that and antibiotics led
to some major ulcers and significant internal bleeding on a few ER
occations. GI problems are way too common with PA people for several
reasons. Some is the meds, some is not enough of the right meds,
including meds to keep your mind from short circuiting your body. I
still think Valium gets a bad rap. It really helped ease things in
the 1970s in small irregular doses. Of course a steady diet of
valium needs close monitoring. Its a shame you can't take valium,
percocet and steroids all the time. You can't. Withdrawal from heavy
pain meds is not much fun either, but it helps you lose weight.
Your Er visit, hopefully NEVER, depends on whats wrong. Don't follow
my old example, get treated by a rheumy and stay out of the ER.
Enbrel costs more than aspirin, but it isn't associated with
bleeding to death. Methotrexate and Enbrel have been lifesavers for
me. Aspirin may be the most useful and dangerous legal pill
available.
When things are realy bad, keep a log of medications you take and
when. An alternative is to ration pills in those day/nite weekly
plastic divider pill boxes, if you can keep the days straight. It is
easy to overdose when the pain or meds cause the dreaded "brain
fog". If you feel bad ,it is good to check what was prescribed. With
10-20 prescriptions a month and similar looking generics, I have
gotten the wrong stuff or wrong dosage prescibed several times.
I have been off full-time work since November, but will restart
full-time in two weeks.
Pete from Baltimore (not the other Pete)

Re: Hopefully a new pain medication

2008-11-20 00:32:23

I have been on Cymbalta for 3 months,it has helped,especially the
numbness in my feet.I can now get up at night and go without my shoes
to the bath room.It has some side effects,but hang there,it works.
hb

07/01/08

2008-11-19 18:55:49

if it helps ken why not do it. for 12h of energy work 200 is a very good
price. i have ried some energy work and haven;t found it helps me too
much but i know one woman who cliams energy work got her off all meds.
who knows? like i said in my last post maybe you need 200 mg of minoo a
day for 6 mos or so? i started with 100 mg mino a day and then after a
year still a lot of pain so upped too 200 a day and wihtin a month was
in full remission. that lasted 2.5 years until i had to stop mino b/c
of yeast issues. i shoudl have dropped down to 100 mg MWF and reated
the yeast but at the time doc told me to stop mino as we didn't know
that yeast was making me so sick. anyway now ttreating yeast and using
zithromax to try and get full remision again. 4.5 mos into it. better
but not at remission.
best
monique

Re: [PsoriaticArthritis] Hopefully a new pain medication

2008-11-19 14:23:40

In a message dated 2/16/2005 1:12:25 PM Eastern Standard Time,
woodworkerdp@... writes:
It is another medication to take but if it relieves the pain that is
coming from between the joints, it will be worth taking. He gave me
a months sample to try and if it seems to be working he will give me
a prescription for it.
I will let ya know if it works.
Hi Dick,
Please let us know if it works because the Vicodins are starting to not cut
it anymore. I also have the PA and fibro.
Janet

Re:Hi Monique: Miscom

2008-11-19 01:47:22

hi ken
ah i see. thanks for clarifying. have you considered upping to 200 mg a
day until you hopefully reach remission and then lowering to 100 mg MWF