Rheumatic

Fran and all
I understand that the Inflammatory Bowel thing is related to having any
autoimmune disease-whether PA, Fibro, RA, etc. Many of us seem to have it.
Also, my rheumy says there is a strong relationship between the GI problems
and spinal involvement-even more so in people with AS. I know that my GI
problems definitely flare up with the PA-especially when my back or neck are
affected. MaryD

Hi Dee,
Thanks for that bit of info, makes sense now.
Dee Levine <ljdsll@...
Hi Lynn,
When I was taking 100mg Minocin twice a day MWF I was experiencing dry mouth
along with dry eyes, like you only when sleeping. When I reduced the Minocin
to 100mg once a day MWF the symptoms gradually disappeared. It would be my
guess that the increased Minocin could do cause these things.
Regards,
Dee

Hi Lisbeth

Here is the link from the article, Carol
http://www.accessdata.fda.gov/scripts/oc/dockets/comments/commentsmain.cfm?EC_DO\
CUMENT_ID=794&SUBTYP=NEXT&CID=&AGENCY=FDA

Okay I need some info. I have just been lurking some lately, trying to work
& everything else. But last week I was in the ER with a stomach virus? It
was so bad the ER CT my stomach, white count was 16,000 said probably worse from
the MTX & sent me home. My RA called for me to get my flu shot & I mentioned
this to her. She checked the results & I will be seeing a GI Dr. soon. I
did not understand that the inflammation from this disease would also effect my
stomach lining, possible heart, lungs, etc.? All of this continued
inflammation from PA? If someone could give me some info. or maybe some of
your
problems were from PA & I didn't realize that it was from PA.
Trying to keep my scattered thoughts in the right direction, even though
scattered.
Love & Prayers
Karen (Miss.)
[Editor's Note: Karen, sorry to hear you have been so cick. Although PA can
affect many organs, the MTX could be at the root of your latest problems. You
may need to change medications. Ralk this over with your doctor. Hope you feel
better soon. Kathy F.}

In a message dated 10/19/2004 12:16:59 PM Eastern Standard Time,
dhandy@... writes:
One of the end joints in my ring finger got swollen
sore and red for no reason that I knew of.
Hey Dave...that was how mine started too...no pain, just swollen fingertips.
Then the nail stuff started, and that's when I got diagnosed...I got lucky
on the first try with Bextra...within a few weeks, the swelling was gone and
hasn't come back since. I have gotten other symptoms (mainly joint pain) and
now treat it with Bextra & Sufasalazine (which is like methotrexate but
somewhat less likely to have side effects).
Honestly, the most help has come from this group, everyone's experiences are
more valuable than anything else. You will find that some of us have
radically different experiences with different meds, so a lot of this will be
trial
and error:-)
Rachel

Annie, I'm sorry you are experincing the ball of the foot pain. I have had
it since PA began for me 3 years ago. I haven't found anything that helps a
lot. However, I no longer wear close toed shoes (even in the dead of
winter) because that makes it worse. I can't even stand socks. But wearing
sandals without socks makes it feel bad too after a few hours. My dream
would be to find a sock that would stay on the bottom of my feet without
covering my toes or putting any pressure anywhere else......I'm a dreamer, I
know. I also try to keep my feet cool. Heat is my enemy. It is so weird
but when I get into the hot tub it feels so good on my whole body but then
the balls of my feet start to feel about 4 times bigger than the skin
allows. It is a tough thing to deal with. Over the past three years the
syndrome seems to be climbing up my legs (more on the left). By the time I
get out of the hot tub my legs feel like wood up to my knees. I'm sorry I
can't paint a rosier picture.
Rachel, if this is what your husband if experiencing anywhere in his body I
hope he finds relief. Enbrel and Arava have helped me but have not
completely eliminated the problem.
Cheri

Thanks to each of you for your kind welcome.
This morning,our visiting nurse who comes to help
my husband and me with our diabetic diets, came
for her weekly visit. Last week was missed
because we were away, so she had not seen my
lesions for 2 weeks. She was really surprised at
how much worse it was. Comparing my case to her
husband's, she said he had never had it as bad as
I have now. My dermy appointment is Oct 27 and I
see my GP the 20th, so he will be able to also
document how much worse it has gotten.
Something curious occurred to me today, that I
intend to mention to the dermy. As I said in my
intro, I am the third generation with P on
maternal side and 2nd on paternal. About 25
years ago I began to have a recurring lesion on
my hip that would clear up, but return within 3-5
weeks. It never seemed to be active when I had a
doctor visit, and when it DID occur I never
seemed to be able to 'walk-in" and have it seen.
After I moved to a small town, I was able to get
to see the doctor when it was there. The country
GP said it was 'some strange kind of shingles'
and gave me valtrex which cleared it up quickly.
It still continues to recur, however.
That lesion looked very much like what I have all
over me now, but only occurred in one or two
spots. I am wondering if there is any
connection.
If it is shingles, I cannot find any mention of a
case quite like it, and if it was the beginning
of psoriasis,why did valtrex work so well? Or IS
there a connection between the two?
I will pass along anything I learn about this
from the dermy.
Karen
=====
Shalom

Annie,
Years ago, before my legs really took off with psoriasis I had what seems
to be like you have now. It was like boils popping up all over my legs and they
hurt real bad. Mine had little white head in them. I went to the Doctor
several times and all he could come up with was saying they had secondary
infection on my legs. Finnally they cleared and then psoriasis took over my
legs. I pray this is not your case. Blessings, Zoella

Zoella, thanks for the response. sounds just like what I get, only I already
have the P on my legs, back,arms, and stomach. It is so wierd...I hope I am done
with them now. I had a second spot show up as severe as the first but it has
finally drained and seems to be going away. I don't really mind the little tiny
ones..they hurt but nothing like the ones that seem to cluster!!
thanks...take care
annie and the pugherd

Hi, Fran!
I am a doc. and give the shots for my patients almost
every week. Some of them require surgery of course,
but most arthritis cases significantly improve. My AP
lasts for more than 20 years. I am on doxy (Dotur)
M-W-F + vitamins more than 4,5 years. I believe it and
it helps me.
Have a good day
Gordon.

For me the arthritis and the P seem to get bad together, and better
together. I just had a new baby so I am going through the flare that
always comes after. It is a bad one. I have never stopped wearing
short sleeves, but I have now. I work at a large company that has a
cafeteria and I was at the salad bar the other day in short sleeves
and a lady behind me took one look at my arms and put down her plate
and left. I wanted to crawl under the table and die. I have had
this forever you would think I am used to it. Guess not. I can't
hide it now though because my hands are getting covered now. That
has never happened to me before. They are really bad with P around
the joints that hurt the most. I go to a derm (another new one) on
Oct. 9th. He takes Saturday appointments! I haven't gotten up the
nerve to schedule with another new Rhumey yet after the last one gave
me a class X drug for my PA while I was pregnant. He knew I was, my
OBGYN sent me! When she found out what he had prescribed, she said
to stop taking it immediately! Luckly my baby is perfect. I did
figure out why my P always gets worse during my pregnancies when
everyone elses got better for them, I think it is because each time I
have been pregnant (5 times total) they have been times of great
stress and anxiety for me and we all know that causes flares. Sorry
to ramble, I meant to answer a question and I wrote a book.
Tamara

Dear PA group,
I have had amazing success recently in controlling my PA via diet
modification, and I want to share my excitement with others who I
know will understand. The bottom line is, my PA is almost nonexistent
after just 4 weeks of watching what I eat!
A quick background. I'm a 32 y/o husband and father of two small
children. The last thing I expected was to be diagnosed with PA two
and a half years ago. It started in my left middle finger, than
moved to my right middle toe, then on and on until just about every
joint in my body has been affected in some way. The pain and
swelling in each joint area varies week by week, from moderately
painful to very painful. Even three months ago, my feet were so sore
that I couldn't walk without a limp.
I started taking MTX and prednisone about 2 years ago, and they
provided relief for about 6-12 months, then they just stopped working
for me. I was afraid to start on Enbrel since it is so powerful, and
my wife and I tend to favor a more natural, homeopathic approach. I
had been reading a book called "Eat Right 4 Your Type" and I also got
the book "Healing Psoriasis" by Pagano. I noticed that the
recommended diet for Blood Type A (my type) in the first book almost
exactly matched the recommended diet in the Pagano book.
Coincidence? I didn't think so. I wonder how many other PA's are
blood type A?
So I tried a very restricted diet. Every day, I ate the following:
Breakfast:
8 oz water with a spoonful of Slippery Elm Bark powder mixed in.
Organic honey nut cheerios (for my sweet tooth)
Lunch:
Small can of salmon
Carrots
Some small pretzels
Dinner:
Stir fry consisting of: canned chicken, tofu, soy sauce, feta
cheese, broccoli-based frozen vegetables
Some organic bread
Throughout day:
Water (2 quarts), steeped with Saffron
Almonds
Raisins
Apples
After just 4 days, In noticed my morning pain had gone down about 50%!
At the end of the week, I went off the diet (birthday party, eating
out, etc) and my pain returned full strength on the following
Monday. But again, after being on the diet about 4 days, the pain
was noticeably less.
I've continued this diet for the last 4 weeks or so, adding things
like rice, tuna, and other cheeses for variety, and even adding back
in sweets like cookies and candy bars. But I've been strictly
avoiding the nightshades. And the results are absolutely amazing...
my wake-up pain is maybe 10% of what I had been experiencing every
day for the last year or more! The pain, swelling, and stiffness are
virtually gone!
I wonder sometimes if I'm simply in a temporary remission period, but
I'm remaining cautiously optimistic that I've found a way to control
my PA naturally.
I'm snapping my pain-free fingers for joy as I write this (something I
was not able to do even one month ago) !!!
-paul

Suzy wrote: I have been put on prednisone for an intense several days tapering
down.
When I was on prednisone, I was the walking dead! It made me very hyper and I
could not sleep either. Hated that feeling. It just might be the prednisone is
making you unable to get a decent nights rest. Once you are off it, the problem
may go away. Hang in there! Linda in Poulsbo, Wa.

Thanks for the advice, Leanne. I do have to take it easy and get
more rest. I live in Northern New Jersey (which can be stressful in
it's own right) though we live in a very quiet, pleasant suburb. I'm
very fortunate that I can stay home right now and that the illness
isn't devastating. It's manageable. I just got scared because I
hadn't had to deal with it for a while and all of a sudden it hit me
like a ton of bricks. Well, I better get some sleep. Thanks again,
Amy

Fran,
Thank you so much for your kind words. Today was really bad but we
made it through OK and I finally did give in and asked for help from
my sister-in-law. She came over after she got out of work and
watched my son while I took care of some things around the house.
Part of my problem is that I don't want to have to ask for help -
before staying home with my baby I was the Director of a health
organization and I worked right up until a month before my son was
born. I know I can't go back to work now full-time but I still feel
like I should be able to do the rest, you know, be a "supermom."
Having this flare just brought me back to reality and made me
realize I need to take it easy for my son's sake.
Thanks again for your response. I know the group is compassionate
from reading other posts, so I was hoping to get some kind words
like yours and others that have been sent. It helps. Amy

---
Hi Elaine and welcome to our group.
Sorry you have had such a terrible time. My GP didn't diagnose my PA-
he didn't know what was wrong with me, finally I went to a Rheumy on
my own-thank God my husband's insurance allowed me to do this-he
started me on MTX and folic acid-I was already on Celebrex, also the
pain patch and Vicodin.
I'm really sorry about your pain, but maybe now you can go and visit
your grandchildren.
God Bless, Sue in Michigan.

---
Hi Heather,
I don't have the rheumatoid nodules and I don't know anything about
them-maybe someone else can help you. I just wanted to say that I am
so sorry for you about your work stress with your boss and not being
able to get your Remicade. Stress is not good with our PA or RA. Is
there anyone else you can go to at your work place or a boss or
supervisor that is over your boss? I can't see how you can work. I
will pray for you.
God Bless, Sue in Michigan.

HI,
I read about black cherries being a natural pain reliver in AARP monthly
It didn't help me any
Bonnie
bonnie

Karen,
I don't typically post too often but reading your message
really hit home with me. I have also had my PA effect other
organs - last Feb I was hospitlized with swelling in my
lungs and about 6 weeks ago I was in again for vasculitis
(swelling in the blood vessles) in my brain. My Rheumy
tells me that while it is not common PA can effect any part
of your body that has connective tissue. After the last
incident he took me off the Enbrel saying we will never know
for sure if it didn't contribute to the vasculitis.
Currently I am taking Sulfasalazine and Indomethacin each 4x
day and Prednisone 30/day. I just stopped MTX due to side
effects and am waiting for insurance approval to start
Humira. While I don't have "answers" for you I wanted you
to know that your not the only one having PA effect other
organs.
Heather (Philly, PA)

Paul:
I have read a lot about all of this however the sources of the information
always ask for money and it seems like a bit of a scam. I think that there is
definitely something to all of this however. Is the diet for A the same as for
A+? Can you drink milk (skim) with this diet? (what else would you put on
cheerios?) What about fake beer? Water, milk and fake beer is all I can drink
without getting heartburn.
Where did you get the books? Do you have an online link?
Slippery Elm Bark Powder...what the heck is that..doesn't sound too tasty.
Dave

RE numerous email about vioxx. Following is my experience with
medications. My PA isn't bad and has been controlled with minocin, but I
still have pain in just about any joint you can think of on some days which
is controlled by the medications in question.
Originally, I was diagnosed with carpal tunnel in both wrists which I'm
sure was accurate, but in retrospect was likely the PA. I had surgery on
the right hand, but not on the left. Both hands are now about the same. I
can now turn doorknobs, but don't have as much strength as I did and the
fingers have decreased sensation.
I started with Cellebrex and developed a bleeding stomach ulcer. Then
switched to Vioxx and developed infections of kidneys and bladder. I was
quite ill. The md's didn't think the infections were caused by Vioxx, but
when I went off Vioxx (and took antibiotics) the infections went
away. Switched to Naproxin which worked well, but I developed an
intestinal bleed which may have been related, or not. I was diagnosed with
a diverticulosis which was bleeding. Switched to mobicox (which has been
used for some time in Europe) and so far have had no further problems.
All medications have worked to reduce pain/inflammation. I (perhaps not
wisely) took/take my medications daily. I've found that it if I don't for
a day, the pain comes back and then it takes a day for the medications to
kick in.
I'm sure that being diabetic and overweight doesn't help.
Good luck to all, Jim

---
Hi Bob and welcome,
I can't help you with the Theraflax question, but I would also like
to know if there is anything natural to help-I'm sure someone will
know about it.
God Bless, Sue in Michigan.

Hi everyone,
I don't post often so I will remind everyone who I am. My name is Crissy I
don't have PA but my husband, David does. He is not much of a list person
so I read the list and let him know if there is something I think he'd like
to read. So he may only have posted once or twice a few months ago.
Here is my question about MTX and pregnancy. First off we have a beautiful
21 month old daughter that we got pregnant before David knew he had PA and
before it got bad. It seems that since we had her it started getting worse
until he finally went to a doctor and was diagnosed with PA. I always said
that I didn't want another child because my daughter is perfect. However
now that we can't have another child I'm not so sure of my choice. I don't
want to regret it later. No one told us about not being able to have
children on MTX ahead of time. And I personally think that every man who is
put on it should have to store a "sample".
Any way David is taking pretty high doses of MTX weekly. At just his last
dr visit the dr decided that since his inflammation levels were normal that
it would be a good idea to try to wean off of I think just the
methylprednisone (take it once a day instead of twice). It didn't take him
long to figure out that wasn't a good idea. The morning after he didn't
take it he could barely get out of bed. So needless to say we are both VERY
hesitant to change anything about his medicine. Especially going totally
off of his MTX which has done wonders for him. I know he wants another
child but I don't know if he would be willing to live 3 months in hell for
it. And I don't see how I can ask him to do that.
I guess other than just talking about this to someone I want to know if
there are any men on her that has went off of there MTX to have a baby and
if so would you mind sharing your experience.
Crissy

Hi Girls;
I don't think you have to worry about Kathryne being a scammer.She
was with this board for ages several years ago and is one of this
board's success stories.Just look at how AP turned around her life.She
went to the same doctor as I do in Ottawa Canada and as the doc says"she
was one sick puppy"Kath. should be an inspiration to everyone. Lynne G.

My dermatologist has put me on double shots of Enbrel. Instead of one twice
weekly, I will now do two shots each time. Has anyone else on this list doubled
their dosage and what was their response? Did your insurance company have a
fit?!?
Appreciate any info. Thanks. Linda in Poulsbo, Wa.

Janiela,
If your right knee is so swollen that you can barely bend it, it is
probably full of fluid. You should get it drained, then get a
cortisone shot in it.
You should also get your right knee diagnosed by means of an MRI. It
is likely that you have a meniscal tear or other so-called "injury"
that is causing the fluid buildup and inflammation. The fix may be
arthroscopic surgery, which may have you walking about that same day.
I went through very similar problems with my left knee last year. An
MRI pointed out a "major meniscal tear," which came as a complete
surprise to me and was then fixed with arthroscopic surgery. I still
have arthritis symptoms, but my left knee works great.
Fluid buildup can also have other causes, in particular
osteoarthritis. But if you have what is loosely called "an injury,"
no amount of Minocin will fix that problem.
Just my thoughts.
Harald

Ethel, Chris, and her son Steve own this list. As owners, they get to set the
"rules". They are also very knowledgeable folks and I am grateful for them.
Thank you.
Denise
www.Jmichaelstyle.com

Dave,
Hmm... the books I mentioned didn't appear to be hucksters asking for
money. The "Healing Psoriasis" book did list some websites to order
the hard-to-find items like Slippery Elm Bark powder and American
Yellow Saffron (www.caycecures.com).
The books say that you don't have to completely eliminate dairy, just
try to eat skim milk products as opposed to whole milk products.
That said, I've used whole milk on my Cheerios for the past 2 weeks
without any side effects. But I've cut my dairy consumption way
down.. I used to have ice cream a lot, but not very much nowadays.
You can get them both from Amazon.com. I just checked the Pagano
book and it says $125... that must be an error... I think I paid
around $25 for it.
According to Pagano, the cause of PA is "leaky gut syndrome". The
Slippery Elm Bark powder helps heal the damaged intestinal lining.
The American Yellow Saffron kicks your kidneys into overdrive and
flushes out the toxins already in your blood. You can get them as a
set from www.caycecures.com. The Bark powder is pretty nasty to
drink, but I keep my mind on why I'm drinking it.
-paul

Dear Denise,
How else did prednisone hurt you. I thought 5 mg was supposed to be a safe
level.
Gloria

I think a lot of folks come to this group because they are having
trouble getting a diagnosis. Even though they may be seronegative
for RA, or even have pain without joint involvement, they end up in
the Rheumy's office because their pain resembles arthritis more
than anything else. They may end up trying various DMARDs, and have
had tests to rule out nerve disorders or other musculoskeletal
conditions. They are tested for Hypothyroidism. They may have
experienced Carpal Tunnel symptoms, or other symptoms of nerve
compression such as tingling, burning, and even hands and limbs
falling asleep. Various terms are used: Migratory Polyarthitis.
Soft-tissue Rheumatism. Tendinitis. All they know is that they are
in pain, and looking for an answer. Something that can be treated.
They are frustrated, because if they have it, then someone else has
had it before too, and someone else has it right now. If only they
could find that other person. And that's why they come here,
arguably the largest arthritis discussion group on the web.
Well, after almost two years of searching, I might finally know what
*it* is. And even though I may not know for sure for another several
months, I want to share this discovery with the group. If you have
soft-tissue pain, particularly in the extensor tendons (the tops) of
your hands and feet, the bottom of your feet, and especially your
Achilles tendons, you may have "Hypercholesterolemic
arthritis", a rheumatic manifestation of chronically high
cholesterol and in particular, high LDL levels. By searching PubMed,
a database of the National Library of Medicine:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
I found multiple citations for articles variously describing Tendon
Xanthomas, a condition where the tendonous fibers are enlarged and
inflamed by lipid-laden macrophages. This form of Tendinitis may be
misdiagnosed as gout, pseudogout or trauma and the possibility of an
underlying lipid disorder is often overlooked. In fact, neither of
my Rheumatologists or my primary care physician knew anything about
this syndrome. And convincing them wasn't easy, either. The
only xanthomas they had heard of were the kind that made lumps on the
skin.
So have you been diagnosed with high cholesterol, and high LDLs in
particular? Has your eye doctor ever reported seeing cholesterol
deposits on your corneas? How about deposits in your upper or lower
eyelids or brows? Has a close family member passed away in their 30s
or 40s from Coronary Artery Disease? Maybe, like me you were too
concerned with your arthritis pain to talk to your doctor about
cholesterol.
On a hunch, I searched for the name of a doctor who wrote the first
american paper on this topic in 1968 for the Journal of American
Medicine (JAMA). He is a public figure who publishes his e-mail
address, and I wrote him with my history and symptoms. Incredibly,
he wrote back within an hour and confirmed the likelyhood of my own
diagnosis. He said if I lower my lipids by 50%, I should be pain
free in six months. Thank God for the kindness of strangers. Like
you guys.
Steve

I'm not on prednisone now, just for a few days to get the pain under
control. I haven't been on for a couple of months....
Thanks for the support
Suzy

I would just like to thank everyone who has responded about my daughter and her
"growing pains." We have decided to pursue this and I have researched a lot in
the last few weeks and we have another appointment with another doctor tomorrow.
We are NOT walking out of there without tests or x-rays to be done. Thank you
all for your advice and encouragement and stories. They have been a great help.
I will keep everyone posted on what happens.
Chrissy

Hey Fran,
Do you have sleep apnea too? So do I.. small world. I can't keep my
mask on either! When my two month old sleeps beside me at night the
air from my mask (I have the new one that goes up your nose like
oxygen tubing, it wakes him up! My husband used to joke with me and
tell me to roll over that he needed some air! (the mask I have blows
out air from the front for when you exhale and the extra air that is
blown in kind of like an air conditioner and he liked the feel of it
blowing on him and cooling him off)
Tamara

Dear Karen, I'm sorry I've been such a lousy pen pal. I hope you are doing
ok except for this recent episode. I think of you all the time, and yet
keep forgetting to write. Just blame it on brain fog I guess.
I'm sorry your stomach was so bad. As far as inflammation goes, my doctor
thinks my major vein or artery I guess in my left leg from my thigh to my
ankle is affect and inflamed by PA. I've had 3 blood clot tests done and
except for being extremely painful from the neuropathy they have all be
fine. Yet my leg and thigh continue to swell and are much worse on the left
side. (My heart if fine right now since I know left sided swelling is a
sign of CHF.) My whole left side is worse though on my whole body for some
reason.
This is a copy of an article I found on PA and the fact that it does affect
more than just our skin and our joints.
Psoriatic arthritis is a systemic rheumatic disease that can also cause
inflammation in body tissues away from the joints other than the skin, such
as in the eyes, heart, lungs, and kidneys. Psoriatic arthritis shares many
features with several other arthritic conditions, such as ankylosising
spondylitis, reactive arthritis (formerly Reiter syndrome), and arthritis
associated with Crohn's disease and ulcerative colitis. All of these
conditions can cause inflammation in the spine and other joints, and the
eyes, skin, mouth, and various organs. In view of their similarities and
tendency to cause inflammation of the spine, these conditions are
collectively referred to as "spondyloarthropathies."
The website is http://www.medicinenet.com/psoriatic_arthritis/article.htm
if you want to read more on this, I thought it was a pretty good site and
really easy to understand.
I hope you are doing better today and I promise I'll write soon to your home
email address. I hope your Mom is not too sick and your son isn't too far
away yet. Take care and know I'm thinking of you. Love, Fran

In a message dated 10/19/2004 8:17:48 PM Eastern Standard Time,
fran@... writes:
Dear Gordon, Does the family doctor give you these shots or your
rheumatologist? Thanks for the info, that's the first time I've heard of
this type of treatment. Sincerely, Fran
Depo-medrol is cortisone and I'm sure you have had it already. That is all
it is. I just actually had my ankle injected a few weeks ago because it
was the size of a baseball and one of my most painful joints. It is so much
better then it was but unfortunately I know it will not last that long. I have
had it before and it comes back in a couple of months. For now though I am
really enjoying the effects of it.
Janet

I have been trying to find out as much as I can about Psoriatic
Arthritis.How can you tell if you have got it?
I have been diagnosed as having it.I couldn't streighten my fingers
and my ankles and wrists swelled.It was very painful.
The doctor said it was tendonitis.I went on steroids and it went
ok.As soon as I came of them it came back.
I paid to see a specialist and have had tests.They said all the
blood tests are ok.They are saying it is Psoriatic Arthritis.I am on
one steroid a day I am ok.They want me of steroids.
They have given me leaflets to read and let them know which
medication I want to go on.They are Methotrexate and Sulphasalazine.
I don't want to go on any.The list of side effects is frightening.
Can anyone help me.
Thank you
Shirley

I'm curious, has anyone else been told they have fibromyalgia, which
causes muscle aches and pains, and/or costochondritis, which causes
pain and inflammation in the ribcage? I suffered from both for many
years and now found out they were both most likely due to PA.
Seeing a chiropractor actually helped. My current chiropractor also
helps with neck and shoulder pain, back/butt (sciatic-like) pain,
and muscle spasms. Seems when my body stiffens up from the PA pain
in my spine, I get muscle spasms and trigger points (previously
diagnosed as fibromyalgia). Trigger point massage, which I can
mostly do on my own, really helps. A real good book is a manual by
Clare Davies which describes how to do trigger point massage. It's
helped me a lot and I would highly recommend it if you suffer from
muscular problems in addition to PA. - Amy

Nice to meet you, my name is Leanne, I live in Australia.
This group here is the best way to see if your diagnosis is
correct. In PA, there seems to be lots of variations of severity and
symptoms, so it's wonderful to speak to a very compassionate and
understanding mix of people.
I do hope you get the answers that you're looking for.
Leanne

Lynne,
I do completely agree with the consrpiacy, I know it
is all around us. I am aware of many, I have had many
problems with the school system, and I don't have
special needs children, I have heard from others that
do that the administration is most difficult to deal
with and there are underlying conspriacies. I don't
know if it is worse here in the good ol' USA but the
concept of Capitolism at All Costs certainly has made
it difficult to have the truth come out about products
if there is money involved, if the product is not a
big money maker, then, it never gets to the public, if
it is a big money maker, then it gets to the
marketplace, NO MATTER WHAT, and once there, it stays
there, NO MATTER WHAT!
With the whole mycoplasma thing, I know from reading
both the Scammell books and Pat Gangers book that Dr.
Brown was definitly black balled. There have been a
few posts on RBF by John McDonald (whom I also
correspond with privately) where he tells that his
entire family has "supposed auto-immune" issues. It
is funny timing as just a week ago, I told my family
that we were all going to get tested, and if anything
is found, we will all go on the minocin. John's
entire family takes the mino. Like John's family, we
too all have some of the symptoms of these
"auto-immune" problems. I am very interested in the
conspiracy to keep the mycoplasma issue and the
antibiotic CURE (yes I said it CURE!) away from public
view. I have been in contact with John McDonald and
Diane Aronson to get information on how I might
volunteer within the RBF to support their mission.
I don't want to put my head in the sand, there is so
much true opportunity here.
Cheryl
--- caroline_rhayader <caroline_rhayader@...

Hello Shirley --
Sorry/happy you found us. Just the symptoms you mentioned sound a lot like
PA. I was diagnosed by a foot/ankle specialist when it came up that I have
psoriasis. He had heard my complaints then he looked at my fingernails and
stated positively that I had PA. I had very little involvement but what
little he saw convinced him. That was 3 years ago and my gp started me on
mtx immediately after a short course of prednisone. I also tried
sulfasalazine but had an allergic reaction. I hated mtx because it made me
fuzzy headed and caused intestinal disturbance but it works very well for
many others. In fact it worked very well on my joints along with Vioxx. I
guess I am taking a long way around to tell you that to take meds is a
serious decision and should be investigated very well. I take Enbrel and I
would take whatever they have to offer to keep moving. It is important to
me to have as normal a life as possible. You need to decide what you want
and what you can risk in order to live your life the way you want to. We
all react so differently to the meds that you may just have to do a trial
and error until you find what you can be comfortable with.
Again, Welcome and hope to hear more from you. Cheri

Not only did prednisone hype me up and cause me not to sleep it precipitated
a psychotic episode in my case. I was literally out of my mind for a
weekend paranoid, psychotic and probably should have been hospitalized.
Many DRs are not aware of these severe reactions because they haven't ever
seen one. I saw a psychiatrist who told me horror stories of people
committing violent acts, giving away their homes, and even suicides
immediately after taking prednisone. More people are sensitive to it than
most of the medical establishment seem to admit. I now have a not in my
medical files that I can't take it.

Try this one:
http://ssl.maxamlabs.com/MAXAM_ASP_CMS_Templates_STD_HTML.asp?PageINDX=4
Geoff

Shirly, If you haven't already been here, go to the following link
and start reading. There are links in here that will get you info
on Psoriatic Arthritis and it will be more info that you want to
read.
http://www.arthritis.org/
Wecome and good luck finding all your answers. This group is a good
place to start.
Dick

Hi Robert,
Good to hear from you. Sorry, but I have never heard of Theraflex. If you
ever try it, let us know how you get on.
Good luck,
Martin

Hi Emily, Since we don't have access to your labs, nor do we want them, nor are
we docs, your best bet is to ask your doc that question. If you are not
satisfied with his/her answers or want more testing, my advice, is to keep on
seeking docs until you have one you feel comfortable with. We are patients like
you, not docs. We can't tell you what to take or not take as meds work
differently on everybody. I am convinced that Mino has worked wonders on me.
Others have not been so fortunate or may have underlying problems we don't have.
Seek out individual help from your doc. Good luck ~~~~Dolores
Emily Rizun <eorizun@...
of tests. I started the testing in Nov/98 and the sed rate was 28 and it is now
15 which I think is a good improvement since starting the ap back in Nov/98. But
the ana back then was 1:160 and it is still the same. I have been on minocin
since Nov/98 and had the iv clindamycin for almost 5 years off and on. Should I
be changing to another antibiotic or stay with the minocin? Thanks for your
input. Emily

You did not say if you were on Minocin. I used to have terrible stomach
trouble until I tried the antibiotic protocol. I was able to get off all meds
except a very small maintanance dose of Minocin. Get Henry Scammells book
"...The Arthritis Breakthrough" if you have not already read it. Many of the
diseases you have can be treated effectively on this protocol. Martha

Welcome to the group, Shefy!
Sally in L. Rk here.
You need to get the book by Henry Scammell, written with Dr. Thomas M Brown
called "The New Arthritis Cure" It includes the 1st book "The Road Back" and is
our "Bible" in this group.
Best doc to go to for AP (antibiotic protocol) is your GP-rheumatologists tend
to hate AP. GP's do AP for people with acne and rosacea for years-why not try
it for RA?!
I know you're scared-we all are, but most of us are a lot older than you, hon!
I HATE that you're so young and going thru this!!
Also, there's a web site www.drmirkin.com where you can download AP that Gabe
Mirkin gives for RA, and that is how I got my docs here in L.Rk to continue my
mino and zithromax (both a/biotics). I brought a copy of his AP. I actually
went to Dr. Mirkin when I lived in the DC area before moving here 3 yrs ago.
Good luck and good health!
Sally in Little Rock

Hi group,
Sally in Little Rk here.
I have 4 or 5 books on herbs and I started MSM pills in April-However, I had a
terrible time getting to sleep-one of the books cited insomnia/hyperactivity
with MSM and sure as shootin', I had to discontinue. Another side effect cited
was nausea. et al, and I dealt with that the 1st time I tried MSM pills a few
yrs back.
I even tried starting at 500 mg (found at Walgreens), as books suggested in
event of side effects scale back dosage. Couldn't find a smaller dose and gave
the MSM to my sister-in-law, who had great success with it combined
w/glucosamine/chondroitin in the past.
The MSM cream for my hands helps me IMMENSELY-just love it.
Good luck!
Sally in L. Rk

Hi group,
As a new member I thought I would introduce myself. My name is Armen
Hareyan and as a health publisher of http://www.eMaxHealth.com I
share concern and interest in Psoriatic Arthritis and we try to
provide free health information. I look forward to beeing a member
of this group and to positively contribute to the discussions of this
group.
My best wishes to all of you.
Armen Hareyan
Hickory, NC

Hi Jeff,
Wouldn't the answer to this problem just be to get tested for borrelia
species? That is, if in fact the test is sensitive enough/reliable
enough to be useful?
Chris.

Dear Amy, Unfortunately I have both fibromyalgia and the costochondritis
(which I recently just found out about) and they can sure make your life
miserable. I also have sciatic pain in my back hips and down my legs.
Every time I've tried a chiropractor I always end up feeling worse than
before I go in. It's almost like a torture session. I also found the
massage therapy works wonders for fibromyalgia and a lot of time your
insurance will cover it if you have a prescription from your doctor. I used
to go every week and then I got so bad I was canceling appointment so often,
I felt bad messing up their schedules so I stopped. I know I need to start
it back up because I used to feel so much better. Another thing that helps
and it's been mentioned before is a hot tub. My greatest relaxation was to
come home after my massage and get in the hot tub. It just seemed to
extended the experience and the pain would stay way for hours. Now I have
so many problems with the heat it has to be freezing for me to be able to
stand the hot tub. (Living in Florida we don't have freezing weather too
much, but I am looking forward to the winter season when it's at least
cooler)
I thought I had read every book on Fibro on the market since my daughter
developed it at the age of 14 and has struggled with it every since. But I
think the one you mentioned below is new to me. Thanks for the information
and the caring support. Love, Fran

Hi everyone,
I never used Vioxx, but Celebrex works well with me for joint pain
and the awful inflamation that goes with it. I've used it for about 4
years. I feel bad about Vioxx getting "pulled".
God Bless, Sue.

Sorry if this message is a repeat, but I was typing a message to you,
hit a button and it disappeared. In case it's gone, I'll do it again.
Thank you for telling me about the Spondylitis. What, if anything,
helps to ease your pain? Heat or Cold? Last week, we bought Owen a
good mattress, so that may help. Plus, he's on Tramal now. He was
concerned about addiction, but his Dr. had a good talk to him about
taking them, so now, he'll take one of an evening. At least he's a
bit comfortable now.
How have you been of late?
Leanne

Dear Martin, Well you are right about Ivan being a bad hurricane. So far
it's not expected to hit near my home or anywhere along the west coast,
though we might have a storm surge from it even with it being 300 miles out
in the gulf. It is one powerful storm. Even though it's not expected to
make landfall near us anymore, no one is really resting until it does land.
After Charlie made that sudden turn and caught everyone off guard, no one
really is relaxing. This isn't one to fool around with and if it were to
turn, everyone would have to run like mad to get out of the way. As is
typical for me, I'm supposed to go to the Cleveland Clinic in Naples this
Wednesday through Friday. Unless the weather is bad we still plan on going
and I'll be glad to just get this over with. All I need is for someone else
to tell me all these "strange" things are the result of PA and then I'll
relax more I think.
As far as your chest and the moving feeling, I think I'd go see the doctor
again. I know it sounds weird and when you aren't in a lot of pain, it's
easy to skip the doctor. I use any excuse I can anymore to not go...lol.
But your chest isn't anything to take for granted. It sounds like you could
be having lung problems especially since it happens a lot when you try and
take a deep breath. Asthma a lot of times shows up only when you do breath
out. (One of the strange things about asthma is during an attack the
problem is getting the air out of your lungs, not in. Of course because you
can't get air out, you can't get it in either, so you lose no matter what.)
I don't know if you have any lung problems in your family, but I've read
where PA can hurt your lungs as well as your heart. Not to worry you
unnecessarily, but you can really hurt yourself by not going in when these
strange symptoms occur. You also said you were having other things happen
this week, so that worries me too. I know what it is like to have a spell
when everything seems to be falling apart. Someday I swear I feel like that
constantly. I will just get one pain somewhat under control and then
something else either starts hurting and half the time I swear it's
something that never even hurt before. Though by now you would think I
would run out of new things to hurt. Probably you have just pulled a
muscle in your rib cage or near your chest, but it makes sense to be sure.
I try to not let the night get me down. It's not easy though when it's
quiet and everyone is asleep. I've found I simply have to get out of bed,
rather than just lie there and worry and hurt. I end up on the
computer...like now..lol, or sometimes I read. I know PA has messed up my
sleep because of the pain. My pain doctor put me on a new drug called
gabitril this week, that is supposed to help with neuropathic pain, but the
great thing is it knocks me right out and I take it at night. So far so
good, I just don't stay asleep, but I'm happy now if I get 5 hours or less
of sleep in a row.
Well take it easy and don't wait too long to see your doctor. We can't let
anything happen to you, the PA site wouldn't be the same without your great
sense of humor...So take care of yourself! I'll email everyone when I get
back from the Clinic. Love, Fran

---
Hi Ericlee,
Please don't worry I'm sure your Dr. will find something else to give
you for a replacement for Vioxx. I take Celebrex and it makes the
difference in my fingers and other joints. I will pray for you.
God Bless, Sue.

There is a TV program next Sunday, 6:00PM PDT on CNN about "Presidents"
Health. I'm not sure, but it appears that they may discuss Psoriatic Arthritis
and Pres. Kennedy. You might want to watch.
Wm. P
Will8546@...

Hi Fran and everyone,
I went to my Rheumy yesterday and he felt so bad that my husband's
insurance doesn't pay for any injectables and my Medicare doesn't
cover Remicade because they only approved it for Rheum. Arthritis and
not PA so he said our next choice would be Arava!! He gave me 3 free
pills and I have to get my prescription filled. I pray that it helps
me. He couldn't believe from a month's time how bad my PA has
worsen. The whole top of my left hand is swollen, I can no longer
bend my left index finger and my my thumb. Using this walker is a
killer with pain trying to walk-when my husband and kids are with me
I use my wheelchair so my hands don't kill me and my hip. How long
did the Arava take before you notice a change? He told me it would
take a few months to notice any difference.
I get my total hip done Dec. 6th-I'm only 43 years old!! It sounds
like an old person thing. The Othro. Dr. said it will be good for 20
years before I have to have another one done!!
I hope you and others in Florida are okay and the "cleaning up" isn't
too major-I have been praying for you.
God Bless, Sue.

Hello everyone,
The last time Owen saw his Rheumy, he sais that he had
Spondylitis, even though he had no symptoms then. Now, of course,
he's having shocking lower back pain. What exactly is it, and if a
scan or something was done, what does it look like?
Sorry to ask stupid questions, but when I've looked it up, I get
the clinical and pathological answers, not the details I'm after.
Thank you
Leanne

Dear Sue, Well your news is great for me to hear. I was wondering if I had
the full benefit from Arava already or it would get better with time.
According to your doctor, it will. I actually felt better within a week to
2 weeks. At first I thought it was just my imagination, but every one
started commenting on my endurance. All at once I could cook dinner, it
still isn't as easy as it used to be and sometimes it's still over whelming,
but at least I'm able to cook 3-4 nights a week and before I just didn't do
it at all. I found myself going out more and staying longer anywhere we did
go. I was working on my glass longer and loving every minute of it. My
biggest problem is not over doing it.
One thing I've noticed with family members is when you do feel better, they
expect you to stay feeling better. I know it's wishful thinking on their
part because I'm the same way, but I have a hard time saying no again. For
example, I made it to my husband's birthday party in Orlando, a 2 hour
drive, up 3 flights of stairs to my daughter's apartment (which I had never
seen yet in almost 18 months, back down the stairs, sat for a 3 hour
concert, and then drove back home for another 2 hours. There is no way in
the world I could have done that before Arava. The problem is I still over
did it and now I've had almost 3 days of feeling bad. It is so scary when
you go backwards after finally making some improvement after so long with
being ill. So I have to start saying no again and realize that I'm still a
sick person, even though I feel like my old self more and more.
It is a wonderful thought that Arava will not only continue to help me, but
get stronger along the way. I had been on Vioxx along with it, but now I
have no idea what to switch too. I really think Celebrex, and Bextra are
the same type of drug, but the studies just haven't been done on them yet.
So it's a scary choice, but that seems to be all we have to choose from with
some of these arthritis drugs. I have to go get my blood tested again for
Arava next week. The first test was fine and I hope it works for you as
much as it has for me. Please keep in touch and let me know if you have any
side effects. I've had a few, but nothing that I couldn't tolerate.
My relapse could also be I dropped my prednisone from 12.5 to 10 for the
past 5 days and it might have been to big of an decrease at one time. I
took 15mg today to hope to stop the flare and plan to go back to 12.5 for a
few more weeks. Then I'm going to ask the doctor for 1mg pills and
hopefully I can lower it more slowly and my body won't respond so badly to
decreasing the dosage. The strange thing for me is when I lower my
prednisone the swelling increases and so does the edema. Just the opposite
of what is supposed to happen, but then I've always been that way with
drugs.
I'm so sorry you have to go t through a complete hip replacement. I'm
facing the same thing with my jaw and it scares me to death. I'm putting it
off as long as I can, but they are more successful with hip surgery these
days. I don't think I've heard of a person who was worse off after surgery,
they all seem to feel better. I use a wheel chair too and I hate it, but
there isn't any choice in the matter if I want to go out. I can walk ok
around the house, but at times it's still rough when my feet are so swollen
and sore.
I know how you feel about feeling old too. I guess we are going to feel
that way regardless just from the pain.
Take care and keep in touch. I can't wait to hear if it helps you as much
as it has me. Take care and I'm praying for you. love, Fran This is
really good news!!!

Texas and Oklahoma 9 years
=====
Shalom

Dear American Sally,
Thank you for your valuable advice. Than you for your
kindness.
--- Sally McQuie <Sally_Mc@...

In light of the vioxx recall, I'm considering trying Mobicox. I read
that it's in the same class of drugs as vioxx and celebrex (but is
cheaper). Also, it doesn't have "coxib" (whatever that is).
Vioxx has worked so well for me since I started using it 15 months
ago (I tried celebrex first for a month and it did nothing for me).
I heard on the news today that Mobicox doesn't carry the same risks
of stroke & heart attack as vioxx.
Has anyone tried Mobicox? Did it work as well as Vioxx?

Hi...
After being out of touch for several days and not reading through the posts ~
and now to read through them all at once, it seems that not only is there is
such a huge difference in how doctors attempt to treat PA and what the insurance
companies are willing to pay for!
Everything I have been told and read ~ mind you, I live in a small town in the
Pacific Northwest, is that agressive treatment as soon as possible is the best
on two fronts, one to stop the dieases from progressing and causing further long
term damage and secondly, it seems the strongest results to guide people into
remission.
So why then, if this is true, are the biologics the last drugs perscribed and
others, that are so harmful for long term use, given freely? Cost? Ignorance?
I think it's the first with the insurance companies and the second with some of
the doctors. BTW, it's been mentioned already, but often a doctor who is
persistant and passionate, can persuade an insurance company to cover something
they normally would not, but it takes time and effort on the patient's and the
doctor's part!
It really is true that one must do all the research possible ~ this list is so
helpful for a starting point and a sounding board ~ and then really push for
what feels right, even if that means pushing your doctor or your insurance
company or both. How sad, but it seems the only way sometimes.
Best Wishes

Becca,
I understand totally -- I am 37 -- RA for 3 years -- with flares most of that
time -- honestly I don't remember what it was like not to hurt all the time. I
have 2 kids and it is very hard not to be able to do things with them because of
the pain, fatigue, swelling, and total feeling bad most of the time. I had
never went without fixing my hair, or wearing make-up until the last 2 years
--most of the time I CAN'T! It is a frustrating disease ----- but I do find
comfort in the support of these groups --- people who really know how much you
hurt and that it is an all over problem -- hang in there.
What meds are you on? I just started the AP and I see a little difference but
just started 3 months ago -- so we will see.
Hollye Bowen

Hi everyone,
I was wondering if anyone can tell me if there are any symptoms
associated with weaning off of prednisone. I was only on pred for 6
months. I was about two months into a flare and my rheum at the time
was saying I had to go on MTX. I flat out refused so he put me on
10mg daily of pred until I could decide what to do. That was on
12/30/05. Hoping to start the AP, I switched rheumys and started
going to Dr. Trentham in Boston. He said he wanted me to get off the
prednisone and start on minocin. I started minocin 200mg daily on
2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.
On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started
having ankle swelling and pain in my lower legs mostly at night but
lately it seems like it's all day. I went to my PCP in early June
and he said he thought it might be the pred but didn't really tell me
to stop. He said I should wear support stockings. I tried, they
don't help. On 6/16 I went to Dr T and he said stop the pred which I
did that day. Now I'm only on Minocin 200mg daily. I'm still having
the ankle swelling and leg pain as well as being tired all the time.
Occasionally I take Aleve (wow does that work great) just so I can
cook dinner and clean up after or if my kids (dd8, ds6) have swimming
lessons or a baseball game.
Sorry this is so long. I wanted to see if anyone else that weaned
off of pred has experienced any of these symptoms (or any others I
didn't mention).
TIA for any input.
Theresa
RA 6 yrs, AP 4 months

hi! just responding to some particular questions I was asked...
my doc is dr. sentef in georgia (he also has a clinic in tennessee).
he's talked a lot about on here, many people on this group have seen
him.
i have used all Garden of Life products and I love them all. if you
can't find raw goat's milk then the next best thing would be raw
goat's milk powder. you can definitely find raw cheeses in stores
now. i also use new chapter products and love them as well. i will
only use whole food supplements.
I live on a farm with many dairy goats so I have tons of raw goat's
milk (sorry, we only produce for ourselves). i will suggest if you
live where you can have goats consider buying your own dairy goat. we
buy most of ours for $100-150, and we buy nubians and sonnens (name
of breed). they are easy to take care of and milking is quick and you
get enough for your family. cows produce way more than a family
needs, unless you give away, use to make soap or other products or
freeze, and they cost more to keep. for those not so lucky, i would
say don't give up until you find somewhere to buy raw goat's milk.
it's easier to digest and many of us, i suspect have digestive issues
so anything to help our situation, right? plus the more demand for
these types of products the more people will start to produce to
supply this increasing demand.
and by the way, goat's milk tastes VERY GOOD! if it tastes funny it's
b/c the goats are eating something to make their milk taste bad.
don't ever be convinced that goat's milk tastes bad b/c this is false.
i drink about a half gallon a day cause i love it so much! our
friends goats milk is disgusting though b/c they eat all kinds of
weeds and whatever else. be sure to have them in a pasture with only
grass and hay or necessary forage and no strange weeds or plants they
might eat that would make the milk taste gross. also these goat's,
especially if purchased young (and better yet bottle fed, they will be
very tame and will love attention) are great pets for children and
also good company for other animals, such as horses, cows, etc.
go to local dairy goat farms, look them up on the internet to find
them, and ask if you can buy raw milk from them directly. i guess the
next best thing would be raw cow's milk but i would stay away if you
have digestive problems.
ivory

Hi Deb,
I have an aunt and uncle who moved from humid Kansas to the desert
area of Boise, Idaho. My uncle feels beter....says he can feel his
hands hurting and swelling when he comes east to the midwest. My
aunt, however, reports exacty what you have. The fronts moving over
the mountains are very hard on her. I want to visit them and see if I
can tell how it would be for me. Their neighbor has a very bad case
of fibro.
I don't think it a strange question at all.
Take Care,
Marti

im sitting here in the hosp, confused , sad up set why me? what did i do to hav
a life like this? i wanna giv up but i wont. more tests docs say yes there is
umthing wrong but we do not know, with all the modern tech now adays it should
be an easy fix.the bone chip in rite hip mite hav to stay its lodged in a very
wrong spot, more pain meds to keep me out of pain, the osteo has been eating
away at my rite hip joint like quote quote, termites in a house, gee im to
young, i need a good prayer and support.well off to my room for the pain meds
hav tooken over my life again, when will this end, is it a bad dream? no im
awake its reallity

Hi, I too have R/A & Scleroderma. I refused to start on prednisone and talked
my connective tissue doctor into giving me minocin last December, (against it,
he gave it unwillingly to pacify me.) Meanwhile, I made an appointment, (my
first) with Dr. Trentham who said he preferred me to get off the plaquenil I was
also on. Right after I started the mino, my hands & ankles also started to
swell and I had pain. I also got double vision & itches. My hands started to
curl into a "C" configuration making a circle when the tips of the fingers
touched together. But I stuck it out and little by little it started to get
better and better and better. I still have puffy wrists & ankles. But my
raynaud's if gone. My fingers are no longer curling. Rarely have pain and the
double vision I had till a month ago is gone. I saw Dr. Trentham on June 26th
and he was pleased with my progress. He drew some blood and I am supposed to
call for the results, but I have been so busy this
week, I haven't called. Have a free day on Friday. I hear it is a long journey
to good health, so I am happy with my progress and I have photos and testimony
from people who have been on Mino for 5 years and they are back to work and
being real human beings with a real life. Yes, I sometimes get tired and head
for a nap when I can or just close my eyes for a little while. Once in a while
I take a valium 5 mg. and that calms down my whole system as that is a muscle
relaxer. Some people take a robaxin or some such relaxer. My goal is to go
into remission, no matter how long it takes and I will eventually try other
protocols. But Mino is the simplest one to follow for now. I practise with
foods and am slowly finding out which ones give me heartburn. I take probiotics
when I need them. On the whole, my husband says Mino is working. Last year, I
could barely roll over in bed. Now, I'm up & out and about every day. I am a
nurse and I look forward to going back to work
part time next month. I am also planning a cruise to the Caribbean this winter
and if all is well, I will go to see my cousin in Germany next summer. We have
been planning to visit Amsterdam, Paris, Barcelona and London. I also have a
friend in Ireland and if she is not sailing on her boat, I will go to Cork
County and visit her too. The main thing with these diseases is to think
positively. Plan for the future, but live in the present and live each day as
though it is a gift, which it is. We were never meant to be permanent residents
of this world. And no one knows how many days they have. So, live well, eat
well, be happy and treat yourself as well as you treat your guests. Make friends
and have compassion. The greatest give is love. Pass it around. Love to all
from Dolores in NYC, NY. No, I can't buy a goat nor keep it in an apartment,
but I can go to whole foods which is where I have started to do all my shopping.
I even bought live lettuce today with the
roots still intact. My first instinct was to plant it. My second one was to
make a salad with it and nourish my body. I chose the latter. Have a better day
every day. D.
merriams_rcn_com <merriams@...
I was wondering if anyone can tell me if there are any symptoms
associated with weaning off of prednisone. I was only on pred for 6
months. I was about two months into a flare and my rheum at the time
was saying I had to go on MTX. I flat out refused so he put me on
10mg daily of pred until I could decide what to do. That was on
12/30/05. Hoping to start the AP, I switched rheumys and started
going to Dr. Trentham in Boston. He said he wanted me to get off the
prednisone and start on minocin. I started minocin 200mg daily on
2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.
On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started
having ankle swelling and pain in my lower legs mostly at night but
lately it seems like it's all day. I went to my PCP in early June
and he said he thought it might be the pred but didn't really tell me
to stop. He said I should wear support stockings. I tried, they
don't help. On 6/16 I went to Dr T and he said stop the pred which I
did that day. Now I'm only on Minocin 200mg daily. I'm still having
the ankle swelling and leg pain as well as being tired all the time.
Occasionally I take Aleve (wow does that work great) just so I can
cook dinner and clean up after or if my kids (dd8, ds6) have swimming
lessons or a baseball game.
Sorry this is so long. I wanted to see if anyone else that weaned
off of pred has experienced any of these symptoms (or any others I
didn't mention).
TIA for any input.
Theresa
RA 6 yrs, AP 4 months
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Hi Ericlee,
Although it's not true for everyone, I actually had minimally better sucess with
with Celebrex for helping take off the edge than Vioxx. My mother expierenced
signifigantly better results with Celebrex, so talk to your doctor, but there
are many replacements. In the past I also took Lodine (indomicin) which also
helped some...
Good Luck,
Karen

Unfortunately, The CDC doesn't give accurate information. There is Lyme
disease in every state and it is a pandemic infection. Europeans are having as
much
trouble getting diagnosed as Americans. Many Lyme or Tick Born Illness
patients end up with false Dx of Fibro, CFIDS, SLE. MS Parkinson's and even ALS.
That is if they get a diagnosis at all. It took five years for me to get a Lyme
Dx I had a Fibro, Dx a CFIDS Dx and a Lupus DX. I fit the criteria for all the
previous diseased or conditions.
The CDC is now willing to say that autoimmune diseases may be caused by
infectious agents. In case of Borrelia the causative agent of Lyme disease. The
organism is so pleomorphic (Changes it shape and can go into a cyst stage that
evades the immune system.) The Immune system knows there is an enemy and goes
into a hyper-immune state, therefore the Autoimmune issues.
An Immune system doesn't just turn on it's self. Something triggers the
immune dysfunction and that many times is an infectious agent such as Borrelia
(Lyme) or Mycoplasma; Both of these agents go cell wall deficient and avoid
detection by the immune system Yet the Immune system knows there is an enemy and
again, the overactive immune system leads to autoimmune symptoms.
There are many reasons the CDC records are inaccurate. In fact a group has
visited the CDC and the NIH with proof of infection in areas they claim or not
endemic. The nymphal stage of the Tick is about the size of a pin head and is
easily carried by the birds as they migrate. The disease has spread along all
the water ways and then inward. I get calls every day from Doctors and patients
from areas where Lyme disease is not supposed to be an issue and they turn
out to be positive.
Emeritus Adjunct Professor of Laboratory Science, Carol Fisch
n a message dated 8/25/06 9:47:54 PM Eastern Daylight Time,
cadlard@... writes:

I can not believe this. I was scheduled to start Remicade on Monday
and woke up today with a Sinus Infection...It is in my head, chest,
and ears. Ok, I know I am having a pitty part right now, but,
Sheesh! I finally got all my ducks in a row and had everything
scheduled and now I am going to have to wait. Well, you know what
someone once said, When we make plans, God laughs! :) I have waited
this long I can wait one more week. I just wanted to get the first
infusion under my belt, so I would know what to expect. I hope
everyone is having a comfortable day. Gentle hugs to all...I feel so
blest to have found this website...I couln't imagine coping with out
you guys. (and gals)
Ann

Recommendations for PCR tests and/or culture for the following
pathogens found in patients with lower urinary tract symptoms (LUTS)
and Rheumatoid Arthritis (RA), systemic lupus erythematosus (SLE),
Sjögren's syndrome (SS), Graves disease, autoimmune diseases as well
as Chronic Fatigue Syndrome/Gulf War Syndrome:
Mycoplasma hominis
Mycoplasma genitalium
Ureaplasma urealyticum
Escherichia coli
Gardnerella vaginalis
Streptococcus agalactiae
Chlamydia trachomatis
* * * * * * * * * * * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© 2006 Sean Dudley & Leslee Dudley. All rights reserved.

In a message dated 9/12/04 1:26:52 PM GMT Daylight Time, fran@...
writes:
You didn't say if the thing that felt like it was
moving hurt? I'm betting it did or otherwise, it might have been strange
but not a big deal.
Hi Fran,
Strangely enough, it didn't really hurt. By that I mean as my whole ribcage
was painful at the time, it wasn't any worse than the rest of the area. To me,
it was/is..........I'll use your word.....strange. I felt like it was
something moving that shouldn't be able to move. It happens after I take a deep
breath (Do you ever feel as if you have not been breathing right for a while
and
then you take a deeper breath than normal?) It seems to happen when I am
breathing out. I don't know....... I have had a couple of strange things happen
over the past ten days or so. Sometimes feel as if I am falling apart at the
seams. Lol
It doesn't feel as if it is anything "deep" it feels as if it is the ribcage
or the muscle surrounding it. I agree with you about it being worse at
night. Even when I am feeling reasonably good during the day, I still struggle
at
night.
Hope you are ok with Ivan bearing down on you. I have been following it on
the news on its path through the Caribbean. It's a bad one ok!
Take extra care,
Martin

Karolyn...welcome to the group. I am from Oklahoma and "ya" is used
all the time and I'm very proud to be from a southern state. So...just
be who you are. Life is hard as it is...dealing with these awful
diseases, so let's all be kind to each other.
Susie Mitchell

Hi Brenda,
I am so sorry that you are in such pain and in the hospital. I pray
that you have a speedy recovery and come home soon. I am just
starting to have problems with my hips and can't imagine what it will
be like if it gets much worse. We will keep you in our prayers and
keep writing. We are all with you.
pat

The Arlington Center for Dermatology is about to begin a Pediatric psoriasis
study for Enbrel.
The study will include patients ages 17 and under. They are actively
recruiting patients for the study at this time. Participants will all receive
the
study medicine free.
If interested in participation, please respond with inquiries by email to
acdermatology@... or fax to (817) 226-7546 as soon as possible
Thanks!

This is interesting, and I don't know whether it belongs in this posting, but
I have AS that is caused by a different bacterium than any mentioned here--and a
different focus of infection.
Professor (emeritus) Alan Ebringer, Kings College devised a test to
differentiate RA from AS and found that every subject with RA had a pathogen not
mentioned here. Later, he studied BSE and this may have led to a breakthrough
in MS research; Mad Cow is apparently an autoimmune disease, and not caused by
prions. The professor has suggested that he will eat any steak (best cuts,
please) from any certified Mad Cow.
These diseases may be due to a molecular mimicry reaction that causes the
autoimmune response:
RA: Usually after a UTI due to Proteus mirabilis (majority of UTIs are E.
coli) and elevated IgG-Pm can be measured; focus of infection is urinary tract
and most common in tissue types HLA DR 1/DR4.
AS/ReA/CD: Due to LGS and reaction to Klebsiella pneumoniae--elevated IgA-Kp
focus of infection is entire digestive system, but typical lesions are at the
ileocecal junction (higher for Crohn's and lower for Reiter's).
MS/BSE/kuru/vCJD: Acinetobacter calcoaceticus may infect the sinus cavities
and cause an immunoglobulin response that results in systemic neurological
damage. In aggressive forms of MS, such as vCJD there may be other bacteria
involved or a more susceptible genetic component. Other pathogens have been
suspected in MS, and treated, in certain individuals, with some success using
powerful broad-spectrum antibiotics.
I am glad that some of this information is being studied, but just wondering
about the germ connection with RA, and I don't want to discount Dr. Brown's
discoveries or the work of those physicians following his successes. I have
only proven the AS-Kp connection for myself, although others have done Giraud
Campbell's regimen for 'arthritis' and have had success with this type of
anti-inflammatory diet. Certainly, diet and lifestyle are major components in
many or most chronic diseases.
Best Regards,
John
Mycoplasma Registry GWI&CFS <mycoreg@...
Recommendations for PCR tests and/or culture for the following
pathogens found in patients with lower urinary tract symptoms (LUTS)
and Rheumatoid Arthritis (RA), systemic lupus erythematosus (SLE),
Sjögren's syndrome (SS), Graves disease, autoimmune diseases as well
as Chronic Fatigue Syndrome/Gulf War Syndrome:
Mycoplasma hominis
Mycoplasma genitalium
Ureaplasma urealyticum
Escherichia coli
Gardnerella vaginalis
Streptococcus agalactiae
Chlamydia trachomatis
* * * * * * * * * * * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© 2006 Sean Dudley & Leslee Dudley. All rights reserved.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
Rheumatoid Arthritis May Be Related To Lower Urinary Tract Symptoms
(LUTS)
By Philip M. Hanno MD, MPH
Medical News Today (press release) - UK - July 10,2006
http://www.medicalnewstoday.com/medicalnews.php?newsid=46693
Patients with systemic lupus erythematosus (SLE), Sjögren's syndrome
(SS), and Graves disease
are reported to be associated with an increased severity of LUTS
compared with control populations. Peeler's recent report that in a
survey of 222 patients with interstitial cystitis, RA was the second
most common IC-associated disease, occurring in more than 13% of his
patients (Scand J Urol Nephrol 37:60-63, 2003), stimulated Lee and
colleagues to look for a relationship between RA and LUTS.
Urinary symptoms, including IC-like symptoms, were investigated in a
cohort of patients with RA. Results were compared with a group of age-
matched controls. Patients with urinary tract infection and those on
medications that could induce oral or ocular dryness were excluded
from the analysis. One hundred eighty-nine patients were compared
with 679 controls. AUA symptom scores and percentage of individuals
reporting severe LUTS (AUA score
Likewise, there was no significant difference in patients reporting
IC-like symptoms as per the O'Leary Sant Interstitial Cystitis
Symptom Index. Multivariate regression analysis did reveal that SS
was significantly correlated with severe LUTS as per the AUA Symptom
Index. There was a trend toward a higher score on the O'Leary Sant
Symptom Index in patients with SS, but this did not reach statistical
significance.
The authors conclude that RA does not by itself predispose to
increased severity of LUTS. Patients with secondary SS do have more
severe LUTS. This is an excellent study. One wonders whether some
symptoms suggestive of PBS/IC may have been masked by treatment for
RA that was ongoing in these patients.
Reference: Scand J Rheumatol 35:96-101, 2006
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=16641041&query_hl=4&ito
ol=pubmed_DocSum
UroToday - the only urology website with original content written by
global urology key opinion leaders actively engaged in clinical
practice. To access the latest urology news releases from UroToday,
go to: http://www.urotoday.com
Copyright © 2006 - UroToday
* * * * * * * * * * * * * * * * * * * * * * * * * * *
Lower urinary tract symptoms in female patients with rheumatoid
arthritis.
Lee KL, Chen MY, Yeh JH, Huang SW, Tai HC, Yu HJ.
Department of Internal Medicine, National Taiwan University Hospital
and College of Medicine, Taipei, Taiwan.
Scand J Rheumatol. 2006 Mar-Apr;35(2):96-101.
OBJECTIVE: Patients with autoimmune diseases such as systemic lupus
erythematosus (SLE) and Sjogren's syndrome (SS) are associated with
an increased severity of lower urinary tract symptoms (LUTS).
Recent surveys also reveal that rheumatoid arthritis (RA) is
prevalent in patients with interstitial cystitis (IC). Therefore, we
have investigated LUTS in patients with RA.
METHODS: A total of 198 female patients with RA, aged 40 years or
older, from the rheumatology outpatient clinic completed this
prospective study. The American Urological Association Symptom
Index (AUASI) score was used to assess the severity of LUTS and the
O'Leary-Sant Symptom Index (ICSI) was used to evaluate IC-like
urinary symptoms in these patients, which were compared to those of
679 age-matched controls. The possible associations of clinical
parameters with LUTS were also explored.
RESULTS: The Mean AUASI score and the percentage of individuals
reporting severe LUTS (AUASI score
symptoms (ICSI score
between the RA and control groups. However, in the RA group
multivariate regression analyses identified patients with secondary
SS (n = 21) to be associated with a significantly higher AUASI score
(p = 0.007) and a higher percentage of severe LUTS (p = 0.02); these
were also significantly higher than those of the control group (p =
0.02 and p = 0.01, respectively).
CONCLUSION: Patients with RA have similar urinary complaints when
compared to controls. However, those with secondary SS have a greater
severity of LUTS, a finding similar to that observed in patients with
primary SS.
PMID: 16641041 [PubMed - indexed for MEDLINE]
* * * * * * * * * * * * * * * * * * * * * * * * * * *
[Role of bacteria associated with sexually transmitted infections in
the etiology of lower urinary tract infection in primary care]
[Article in Spanish]
Gonzalez-Pedraza A, Ortiz C, Mota R, Davila R, Dickinson E.
Centro de Salud Dr. Jose Castro Villagrana. Tlalpan. Mexico.
silviala@...
Enferm Infecc Microbiol Clin. 2003 Feb;21(2):89-92.
INTRODUCTION: Urinary tract infections (UTI) are the second most
frequent type of infectious pathology treated in primary care
clinics. The participation of microorganisms associated with sexually
transmitted infection has been reported as a cause of UTI;
nevertheless this concept is still controversial. To gather data on
this subject, we carried out a search for Gardnerella vaginalis,
Ureaplasma urealyticum, Mycoplasma hominis and Streptococcus
agalactiae besides the common microorganisms involved in
UTI. METHODS: A total of 1507 urine cultures from patients with a
clinical diagnosis of low UTI were analyzed. Samples were inoculated
onto 5% sheep blood agar and McConkey agar, as well as HBT medium for
G. vaginalis, and U9B broth and agar E broth for M. hominis and U.
urealyticum.The following parameters were analyzed as possible risk
factors: age, sex, pregnancy and diabetes status.
RESULTS. There were 436 (28.9%) positive urine cultures. Escherichia
coli was isolated in 44.34% of cases. Microorganisms associated with
sexually transmitted disease were found in 162 (37%): G. vaginalis
(25.7%), U. urealyticum (5.9%), S. agalactiae (3.4%) and M. hominis
(2%). UTI were more frequent among the 20 to 40 year-old age group,
in women and in diabetic patients.
CONCLUSIONS: Microorganisms associated with sexually transmitted
disease were found in a large percentage of cultures, indicating the
need for studies to clarify their role in the etiology of UTI.
PMID: 12586032 [PubMed - indexed for MEDLINE]
* * * * * * * * * * * * * * * * * * * * * * * * * * *
[Mepartricine and prostatitis. Clinical experience and rationale for
use][Article in Italian]
Minerva Urol Nefrol. 2001 Sep;53(3):129-33.
Saita A, Morgia G, Branchina A, Giammusso B, Iurato C, Malacasa E,
Motta M.
Divisione Clinicizzata di Nefrologia Chirurgica-Urologia, Universita
degli Studi, Catania, Italy.
BACKGROUND: The purpose of this study was to report our experience on
the use of Mepartricine in the treatment of chronic and sub-acute
prostatitis and to analyse, on the basis of the literature, the role
of estrogens, the target of Mepartricine in the development and
maintenance of prostatic inflammatory reactions.
METHODS: In a retrospective study the data of 110 patients who
presented with lower urinary tract symptoms suggestive of
prostatitis, from January 1994 to February 1999 have been evaluated:
65 of this patients had an abacterial prostatitis, and 45 a bacterial
prostatitis. The Mearers-Stamey test was used to localize
inflammation and pathogens to prostate. The clinical symptoms
presented were essentially pelvic and perineal pain and irritative
and obstructive voiding symptoms. The treatment was based on
antibiotic therapy indicated by the sensitivity to antibiotic assay.
In abacterial prostatitis, in cases of Chlamidia, Mycoplasma and
Ureaplasma positivity, the treatment was based on macrolides and
tetracycline use. All the patients received Mepartricine by oral
supply, 1 daily tablet (40 mg) for 60 days.
RESULTS: After two months of treatment remarkable improvements in
symptoms were obtained despite the persistent bacteriological
positivity in the prostatic secretion in 68% of cases. Therefore
antinflammatory antiedemic and decongestant effects of Mepartricine
on prostatic inflammation, are observed. CONCLUSIONS: The data of the
literature show data estrogens modulate inflammatory reactions: it is
possible that their decrease can produce, at prostatic level,
antinflammatory effects improving urethro-prostatic bladder
functions. Personal experience seems to confirm this supposition and
so we think that Mepartri-cine can be considered and excellent
coadjuvant in the treatment of prostate inflammation, independent of
etiology.
PMID: 11723437 [PubMed - indexed for MEDLINE]
* * * * * * * * * * * * * * * * * * * * * * * * * * *
Cytokine concentrations in seminal plasma from subfertile men are not
indicative of the presence of Ureaplasma urealyticum or Mycoplasma
hominis in the lower genital tract.
Pannekoek Y, Trum JW, Bleker OP, van der Veen F, Spanjaard L, Dankert
J.
Department of Medical Microbiology, Academic Medical Center,
Amsterdam, The Netherlands. y.pannekoek@...
J Med Microbiol. 2000 Aug;49(8):697-700.
The inflammatory response to the presence of Ureaplasma urealyticum
or Mycoplasma hominis in the lower genital tract of subfertile men
without any signs or symptoms of infection was investigated by
measuring the concentrations of interleukin (IL)-6, IL-8, tumour
necrosis factor-alpha (TNF-alpha) and interferon-gamma (IFN-gamma) in
seminal plasma. Semen samples were collected from 30 culture-positive
subfertile males and 23 culture-negative subfertile males. Enzyme-
linked immunosorbent assays showed that IL-8 was present in
relatively high concentrations (0.12-4.8 ng/ml) in all semen samples
investigated. In contrast, the other cytokines were only detectable
in 72% (IFN-gamma), 44% (IL-6) and 19% (TNF-gamma) of the samples and
were present in relatively low concentrations (1-410 pg/ml). Seminal
plasma cytokine concentrations were similar in samples from culture-
positive and culture-negative males. These data strongly indicate
that the presence of U. urealyticum or M. hominis in the lower
genital tract of subfertile males reflects a silent colonisation
rather than infection.
PMID: 10933253 [PubMed - indexed for MEDLINE]
* * * * * * * * * * * * * * * * * * * * * * * * * * *
Association of ureaplasma urealyticum with abnormal reactive oxygen
species levels and absence of leukocytospermia.
Potts JM, Sharma R, Pasqualotto F, Nelson D, Hall G, Agarwal A.
Department of Urology, The Cleveland Clinic Foundation, Cleveland,
Ohio, USA.
J Urol. 2000 Jun;163(6):1775-8.
PURPOSE: Ureaplasma urealyticum is a commensal of the lower
genitourinary tract of many sexually active adults. The organism is
more common in partners of infertile than fertile marriages. We
conducted a prospective study at our tertiary care center to confirm
a possible association between U. urealyticum and abnormal sperm
function parameters.
MATERIALS AND METHODS: A total of 50 consecutive male patients
seeking general urology consultation for lower urinary tract symptoms
characteristic of chronic prostatitis were evaluated. Urine and semen
localization cultures were performed with additional semen cultures
for U. urealyticum, Chlamydia trachomatis and Mycoplasma hominis.
Specimens from 21 healthy men were used as controls. Specimens were
analyzed by a computer assisted semen analyzer, and verified manually
for concentration, percent motility and morphology. Leukocytospermia
was measured by the Endtz test. Semen specimens were also analyzed
for reactive oxygen species (ROS), acrosome reaction and mannose
binding assay. RESULTS: Of the patients 17 had positive U.
urealyticum cultures and the other cultures were negative. Patients
with U. urealyticum had significantly higher ROS levels (log [ROS +
1] = 2.52 +/- 0.25) than those without U. urealyticum (1.49 +/- 0.20,
p = 0.002) or controls (1.31 +/- 0.19, p = 0.002). Leukocytospermia
was detected in only 1 of the 17 (6%) positive specimens and 4 (12%)
negative specimens.
CONCLUSIONS: Seminal ROS levels are elevated among patients with U.
urealyticum. ROS induces lipid peroxidation, which reduces membrane
fluidity and sperm fertilization capability, and may be the mechanism
by which U. urealyticum impairs sperm function. Absence of
leukocytospermia does not exclude U. urealyticum.
PMID: 10799180 [PubMed - indexed for MEDLINE]
* * * * * * * * * * * * * * * * * * * * * * * * * * *
A double-blind, randomized, controlled multicentre study to compare
the efficacy of ciprofloxacin with pivampicillin as oral therapy for
epididymitis in men over 40 years of age.
Eickhoff JH, Frimodt-Moller N, Walter S, Frimodt-Moller C.
Glostrup Hospital, Denmark.
BJU Int. 1999 Nov;84(7):827-34.
OBJECTIVE: To compare the efficacy and safety of ciprofloxacin 500 mg
orally twice daily with pivampicillin 700 mg orally twice daily for
10 days in men with acute epididymitis and over 40 years of age.