Rheumatic

Hmmm! Celia, everybodies reaction to meds are different. Whatever you do, wean
slowly and add slowly. Try things out and don't end anything abruptly. Listen
to your body and it will tell you what to do. Good luck! Dolores
Celia <Gen_Searchin@...
other normally prescribed meds)
and started the A/P? How did the traditional meds affect the A/P? How
long did you have to take the traditional meds before getting off them?
Thanks. I'm on MTX and being weaned off prednisone, and am very curious
about A/P, which of course my rheumy shot down immediately. I have two
very young daughters and I'm afraid to get down as bad as I was, but
also very afraid of what the traditional meds are doing to me.
--Celia DM/Interstitial Lung/Raynaud's, dx 10/2004

Than you for posting this
cooky

Hi Amy,
From what I've read, hereditary does play a part. However, for me,
I've got 6 brothers and sisters and I'm the only one with this
problem. I've got plenty of older nephews and nieces and cousins
and still, I'm the only one. I vaguely remember my grandmother
having a problem with her skin but this wasn't until she was 98 (and
she was still going up and down stairs)...so I don't count her.
At first I was feeling a bit of the "why me"s. After going through
some of that and getting my first dose of Enbrel for $5 (w/out
insurance would have cost almost $1,300) I've moved into the "why
not me" phase. I think God chose me b/c he knew I had a supportive
husband and great insurance. I pray every day for those among us
who aren't as fortunate.
Mary

my psoriasis is so bad right now. i have it on elbo,
both, hands, feet hair ears and some other places i
wont mention. remcade for 3 years nothing enbrel for
6 months nothing the pa is raging please any advice..
is it all worth it, why cannt it be a normal happy
life Donna

Elisa, I have said this many times before but it truly works. Every time he
takes a shower or has a bath he needs to dry very well then dry the affected
area with a hair dryer. It sounds silly and seems like it would only last
until you sweat in the folds again but it really helps. I know there are
creams and ointments that work well too but the hair dryer is really a good
trick.
My best to you both. Cheri

Hi Kelly
I hear you! I have been through it all with docs.
There is a doctor -I believe she is in Spring Green
who can help you with the antibiotic treatment, which
really helped me. I did not treat with her, but here
is her name and address:
Kay Balink
Spring Green Medical Center
the blurb in the ad reads:
We are a family-oriented facility offering quality
services for the entire family. Laboratory, X-ray and
Physical Therapy procedures are available on-site.
150 E. Jefferson
Spring Green, WI 53588
Ph:(608) 588-7413
Apparently she is into treating these diseases because
she got lyme disease herself and learned about
treating joint problems with the antibiotics. At
least that's what my dentist whose wife she was
treating, told me.
The other alternative is to go see Dr. Mercola in the
Chicago area. I went to him in January 2000 and while
the treatmetnt was almost worst than all the symptoms
of the disease I had up till that time, it was well
worth it. I have been well for over four years. His
bedside manner is a bit brusque and if you don't
educate yourself before you see him, you might find
him a bit intimidating....his diet is killer!
Seriously...I had to change my whole lifestyle for
more than nine months. But , at this point, I pretty
much eat what I like and seem to be holding my
own...and best of all, am on no medication. I ride a
bike, do tai chi, and play musical instruments...all
of which would have been impossible before I met Dr.
Mercola.
I have been bedridden with awful pain and depression
for over a month at a time, and so, i can totally
understand what you are going through.
Give up your hopelessness...you have to be strong,
determined to beat this thing, and prepared to learn
everything you can about the tools available to you,
but you can beat it! No doubt in my mind.
Feel free to write with questions if I can help.
Where are you in Wisconsin? I'm in Madison.
Susan Boston

In the past I often had the same problem. UV treatments have helped with this.
My doctor
has a DAAVLIN light machine that is wonderful. It is totally computer controlled
so you do
not get burned and my psoriasis is no longer the problem that it was. In fact
the UV
treatment have kept my skin clear for a very long time. I wish I could say as
much for the
arthritis.
Tom

http://www.ars.usda.gov/is/pr/2006/060511.htm

Hi Heather,
Sorry to hear that your boss is not very understanding or helpful. As we
keep saying here. He needs to suffer this for a while to understand what it is
like. I reckon an hour should do it. What do you think? lol
Hope your pain relief works for you.
Take care,
Martin

Hi Kelly;
I was just at my AP doctor's today and was complaining about the
achiness and stiffness in my hands and torso.Dhe explained how grains
and foods in the nightshade family cause such problems.I was off all
grains with gluten as we found out I have a gluten intolorance.Now she
has taken me off all grains ,beef and dairy as well as the nightshades
for 3 weeks to seeif it will help.After that I can add back each things
one by one at weekly intervals to see what happens.All grains with
gluten are forbidden for the rest of my life.Seems that most people with
chronic diseases have gluten intolorance. Lynne

Dear Marti, I have no idea if bone scans are expensive. My guess would be
they are since you have to have a radioactive dye injected into your veins.
Then your whole body is scanned. I didn't have any problems though, but
like you I showed many problem areas. Both my hands were really red, and I
have had at least 3 rheumatologist tell me my hands aren't swollen or
inflamed. I've asked them what the edema is around the joints and why are
they so red and sore? But normally they just ignore the question. I had a
lot of double areas light up like, my ankles, knees, hips, hands, shoulders,
face and elbows. What I thought was strange is I have EM or erythromelalgia
in my face and hands and they were the brightest spots of all. So I wonder
if it is related to that in any way as well.
I just had an MRI done on Wednesday and still am sore. I felt like I way
lying on a wooden plank for 30 minutes, and that was only to check out my
spinal area in my neck. By the time they got to my lumbar area, I was
dying. I felt like such a baby, but my back hurts anyway and to force me to
lie on something without any real padding is almost torture. I did make it
through the bone density test, and I should have these results next week.
My neck was worrying me the most since my numbness is in my left hand the
most. I've had them done before and they weren't exactly comfortable, but
they never got me down this much. I hope it's not a sign of things to come
with my spinal area.
Well Take care and thanks for the emails. Take care and I hope you feel
good tomorrow. Love, Fran
.

Hi Kyle
A great question which merits some thought. I'm afraid i'm too ignorant even
to hazard a guess but I hope someone can answer it.
Ken.
Kyle Carbone <sammiches42@...
Sorry if this seems like a naive question, but it's something I've
been wondering about and haven't yet come across any good reasoning...
How do the traditional non-infectious theories about autoimmune diseases attempt
to explain the localized nature of many of them? If a person's immune system did
indeed decide (for whatever reason) that joint tissue itself was the enemy, why
would it choose to attack only certain joints and not others at any given time?
And how is it that inflamed areas can "spread" from place to place in/on the
body over time if there isn't some (thus far undiscovered) local causative
factor provoking the reaction? One would expect a truly haywire immune system to
see all connective tissue of a certain type as a threat and to attack it all
over the body at once, not just in certain places.
Any ideas or opinions?

Hi again...
As you know, I've very new to the group and am by no means an expert, but I was
wondering about the use of Prednisone with PA
I understand not everyone may be expierencing the same benefits and/or side
effects ~ as with all drugs. I'm also assuming it must be working well for
those on it (and perhaps the only option for many people), certainly having a
life with less pain is worth a tremdous amout of side effects.
I'm wondering about it first of all, because my doctor told me that it is
frequently used for RA, but not for PA because it is known to worsen the
psorisis ~ in some cases, extremely. Has anyone else heard this?
Secondly, my ex-husband suffers from severe asthma and was on high dosages of
prednisone for years. The side effects were severe (weight gain, pains in his
joints and nerve endings, servere depression and an inability to heal, but for
years it was the only drug that worked and if he wanted to breath, he had to
live with the terrible side effects. A few years ago, a drug was released that
has been his miracle drug and he has been off all oral and injection forms of
prednisone during this time, however, he remained on a preventative inhaler.
Just this past month, they took him off of the prednisone inhaler because he
could no longer recover from simple things like a sinus infection or a cut on
his arm. The doctors said all along the dosage was too minor to have any
impact, but for him and others, this was not the case.
I hope sharing this information is helpful and appropriate.
Best wishes,
Karen

Hi Jane,
I am also on Tricor and my tryglycerides were almost 1000 and that was
while trying to diet. SOme people just produce a great deal and I am one of
them. I am very overweight and between my thyroid disorder and having trouble
exercising I am getting bigger. I have found that the Humira is putting extra
weight on as well. I think I must have gained about 10 pounds taking it.
Is anyone else having this problem?
Janet

We had this discussion about 2 years ago and it seems to me it turned out that
those who lived in humid climate felt better in the dryer areas and, like myself
who lives in a basically dry climate, vice versa. I feel so much better when I
get west of the mountains, Seattle, Victoria B.C, etc. My hair gets soft, my
skin doesn't itch and my joints feel better. I keep wondering if I moved there
would it eventually switch to where I would do better here on the east side
where it is dryer. This subject is as difficult as herding cats. We use a lot
of energy on it but don't get much accomplished. One thing is for sure.......if
the perfect place is ever found it will be heavily populated by us! Happy Labor
Day.....Cheri

Today on Kim Komando's website she posted the following link concerning the
connection of weather and pain. Thought it would be of interest to
everyone.
Feeling the weather----Kim Komando
Being National Arthritis Month, I thought we should talk about aches and
pains. My grandma used to predict the weather by her sore wrists. As a
child, I didn't believe that was possible. Now, it's a known fact that the
weather can affect people directly.
Today's Cool Site allows you to get more than a weather forecast. It will
also predict how much that weather will cause pain. Simply enter your ZIP
code. Pain is measured on a numerical scale.
A U.S. map is also available to track the Aches and Pains Index. You can
change the map to check for air quality, allergies and other health issues.
An explanation of how the weather causes pain is also on the site. When
explained, it seems very logical. I guess my grandma could sense the weather
after all.
TO VISIT TODAY'S COOL SITE, GO HERE:
www.weather.com/activities/health/achesandpains

Hello group - My name is Jennifer and I am 28, single mother, who
has been diagnosed with P at age 15 and finally at 25 with the PA.I
ve been denial of it until a flare comes and the pain worstens.With
in the past three months I have also come to realize that I have
manic depression. Who would not be depressed if the had "dots" all
over them.I have always had boyfriends and people understand.I think
my pain didnt help my marriage.It is hard for others to understand
that everyday I hurt, I dont make an annoucemen. My son,who is 7
always ask questions and is so concern about them and how I feel, do
they hurt, mommy go lay out in the sun.He is what keeps me alive and
going.I feel like a flare is coming on so I called a rhemu ,but ever
time I go I get scared this time I mnot Im going to take it on with
a positive outlook. I want to feel better. I tried Metx. and my
blood work came back bad, this was a couple of years ago So I am
hoping to try the Enbrel, i cant take the pain in my
back ,neck,certain fingers, i also think my hands look hurt
different. I mean I had cute feet b4 now I work on my feet and I
cant see that changing right now.It might have to be one day.Im sure
after the rhenu Ill have another autoimmunine disease to add to my
list. I feel like writing this allows me to take responsiblity for
my diseases. I have been reading this group for years thanking you
without your knowing ,for years i thiought I was the only person
that could walk in the morning, doctors not knowing what was wrong
then one day they all put there brains together, know it is my turn
to make it work. My appointment is Thursday Ill keep u posted
thanks!!Jennifer

Kathy, you win the wisdom award as usual. I am still grappling with the idea
that stress can cause such horrible physical problems but the closer I look the
more I believe it. The thing that gets me is I always thought I had no more
than normal stress. So is it how our bodies process it? By the way, you do a
terrific job of moderating!
[Editor's Note: Aw, Cheri, you are too sweet. Thanks for the nice words! The
role of stress in wellness has been well documented. Even daily life has its
cares and woes so anything we can do to lessen stress is a plus, I think. Yoga,
crafts, exercise, meditation - these are all tried and true stress relievers.
The way I look at it is that even though a positive attitude is not a cure, at
least I try not to make myself and those around me even more miserable by
focusing only on the negative. Positive thoughts may not be a cure, but at
least we can be happier being diseased! Our disease fills us with pain, stress
and all the angst that goes with it, so we really have to find another place
within us to tap into our well of happiness. Hope your well is overflowing.
Kathy F.]
Cheri, you may have hit it on the head. Perhaps we feel better when we
switch places because we leave the stresses of home behind when we go away. The
adrenalin pumps and a happy feeling ensues. Once we return home, the bills, the
chores, the same-old-same-old awaits us and without all those endorphins and
adrenalin from travel, we feel crummy again. Maybe we should become a
traveling caravan!
Kathy F.

Hi Brenda...
I wanted to send a quick note to let you know I too am sorry you didn't receive
strong support from the group...
Please know that anytime any of us reads someone's message, there is always a
level of understanding and support ~ even if the messages aren't posted in
response. I also think we sometimes don't respond in written words to
situations we aren't as familiar with ~ since we really don't have any helpful
information to share.
I hope you are able to receive your surgery soon ~ that a bed becomes available
~ and that it all goes as smoothly as possible. I can only imagine at what you
are going through, but it must be so very painful, difficult and frustrating (an
awful combination) ~ I am sorry.
Best Wishes,
Karen (idaho)

Hello, My name is Leanne, I'm from Australia, and I'm the Mother of a
14y.o. with PA. He too has a really nasty, aggressive form.
Aren't Dr's delightful?! Whether I'm seeing a Dr for myself, or
for Owen, I've learnt to take a list of questions, comments,
whatever.I start writing all the time, whenever I think of something,
no matter how ridiculous it sounds, I write it down. In a way, we're
lucky because Owen's Rheumy is great, quite nutty, but good. He
knows 'my list' thing, so basically as soon as we sit down, he asks
for my list, and answers what he can, comments on the rest, and then
I write it all down. That way I don't forget anything. Our 'normal'
local Dr. is the ones I have problems with. For starters- they don't
know much! You will find that you know more than them, which in turn,
makes them resentful. When that happens, change Dr's. until you find
one you can tolerate. We've seen 6 in the last 2 months. Whether I
come accross to them as an annoying mother, or whatever, Idon't care.
As far as depression goes, you're right, who wouldn't be
depressed? The prospect of a wheelchair (we're having that problem
with Owen) is really scary. Do you take someone in with you? A
partner, a parent, or a friend? You may find having someone else
there might help because 1. Dr's are less likely to bully you, and
2.They can be objective,as to whether you are being treated properly.
If I can think of anything else, I'll let you know. I'm here for
you.
Leanne

good luck better times can be ahead and hug your son
greg

Hi Everyone,
I was diagnosed with Ps last year and secondary Fibro and Myofacial
Pain syndrome three months ago. I have had psoriasis for 30 years.My
orginal rhuemy I liked and he had me on Enbrel and MTX 8 Pills a week
and celebrex, folic acid. Then my insurance changed and so did my
Rhuemy.
In July when I went to see the new one, I had no psorisis at all and
was feeling pretty good except for my hands. My thumb on both hands
are very painful. I was supposed to get a cortisone shot but this
rhumey wanted to wait 3 more months. He added the Fibro to my
diagnosis. I have bad pain and stiffness in my lower back.
Last weekend, I could hardly move my neck. By Monday, knowing it is
hard to reach this rhumy, I went to the er. They gave me Flexeril and
said goodbye. I called the Rhumy when I got home 9am. You have to
leave a message. At 5pm she called me back and took the info to relay
to the doctor. She said she would call me back. I called again on
Tues when I didn't hear from her and left another message.
By Wednesday, I still didn't hear anything so I went to my GP and she
gave me Pain meds and said stop taking Flexeril becuase it doesn't
help.
Wednesday the nurse finally called back, and said the doctor wants to
know if you still take the soma at night. I said yes. In July, he
took me off the MTX. He put me on Soma and Ambien at night to sleep,
put me on 1200mgs of Daypro during the day. I am still on Enbrel.I
guess he figured that if I didn't have psoriasis anymore that he
could take me off the MTX.
Anyway, on wed the nurse calls to ask me about the soma and says Dr
wants to know if you ever took pain meds. I said my Gp just gave me
Vicodin1-2 tablets every four hours. I said I am not taking that
much because it is too strong. The Gp put me out of work until monday.
The Rhuemy nurse said I let him know about the vicodin and call you
back. Well now it is Thurs. She calls me and says Dr says to take a
vicodin at bedtime also.
I really can't funtion on all this pain meds. The psoriasis is coming
back on my legs arms, and feet. I feel pain in my lower spine and
neck, although I can now move my neck which I couldn't before because
the pain was so bad. My skin is looking bad again and all they can do
is give me more Pain meds?
In addition, my husband doesn't believe any of it and thinks I am
crazy. I don't get alot of redness or swelling and I think that makes
it hard for people to know how much pain you are in. I feel like I
am alone with my pain. My kids (12 and 14) were mad becuase i
couldn't drive this week, and they had to help a bit. I go back to
work Tuesday in a developemental classroom. I am an aide and love my
job but I don't know if I can lift these kids and bend and get up and
down from the floor with them.
I would love to change jobs because the people at work are covering
for me. They try to do the heavy stuff. This is not fair to them.
They are wonderful people and very caring,but my husband would have a
fit if I mentioned leaving. We don't make much money and we can
barely make it week to week. I am not sure of what to do.
Thanks for letting me vent about my new Rhuemy and my pain.
You are a wonderful group of people.
Pat

Dear Sue, I'm glad you stuck to your guns! It is so frustrating that we
deal with uneducated people everyday about our disease, but when it's
someone in the medical community it makes you want to scream...I've been
lucky and hadn't had the flu for years, though I probably just jinxed myself
really bad with those words..lol. I asked my doctor if the flu shot could
be taken with Arava and he wasn't sure. He said I need the pneumonia one
more since it isn't a "live vaccine" and I have had so much trouble with my
lungs. So I'm getting that the next time I go in I guess. I guess there
aren't as many risks with the "dead" vaccines versus the "live" ones.
Do you think that all of us need the flu shot? The last thing I want is
more side effects from something. If anyone on Arava is taking the flu
shot let me know, ok?
Anyway, Sue, I'm glad you got yours and you are hopefully protected some for
this season. Take care, Love, Fran

My Dear Kathryne;
I am so proud of you and I sure hope you are proud of
yourself.Without you I would never have hear about Dr. Armstong in
Ottawa.I have SD and am doing very well but managed to do so even before
meeting her.Since then she has found many food intolorances and that I
have Celiac as most of us do.I am now running my own business and you
can take a peek at my orchids at www.exoticorchidsplus.ca....great fun
and sooooooooo much work it is unbelievable!
Now I am trying to educate some really dumb people on other SD
sites.OUFFFF can they be dense and seems like many are just content to
be sick and get pity.I have a very tough time keeping my patience with
them but some are getting the message.Got to run as I just came in for a
pee break and I have hundreds of orchids sitting on the floor waiting to
be repotted
Lynne Guimond

http://virtualjimdisney07.kintera.org/faf/donorReg/donorPledge.asp?ievent=159730\
&lis=0&kntae159730=E080AC2F5C464F3D873D1FAD806028D8
<http://virtualjimdisney07.kintera.org/faf/donorReg/donorPledge.asp?ievent=15973\
0&lis=0&kntae159730=E080AC2F5C464F3D873D1FAD806028D8

Dear Sandy, thank you so much for the information on spinal problems. I
love the Merck manuals and normally look up a lot of medical information
there. I try to use the ones the doctors use since I think they have more
information at times, but this one looks just as good. I do think my neck is
a little better, but that might be because my knee is hurting so much I
don't feel like I have a neck...lol. My daughter talked me into going to
Pier ! and I don't take the wheelchair in there as the place is so crowded
with merchandise. I can just see how many things we would break in the
first few minutes! But I'm paying for that now with my knee. I have
another bone spur there too and if I stand on it too long (my knee, not the
bone spur..lol) it causes me to developed water on the joint. So it's all
swollen today and feels like I've got a water balloon for a knee right now.
But at least with this disease we never get bored, since everyday a new
thing finds a way to hurt!
Thanks again though and I'm going to go back and re-read the site you sent.
Love, Fran.

Denise,
Thank you for sending the wrist exercise link. I use a lot of these
stretches in my classes and people find them helpful
Take care,
Ute

Hi Jakie,
No, They have been talking about putting me on Enbrel for over six months
now but the last couple of times I have been to see them they have changed their
minds at the last minute. it was my own fault last time because when they
asked me how I was doing on Ciclosporin, I told them about what had improved
before what had deteriorated! So they said "Well we will keep you on that for
another three months." The good news is that I had to go to the hospital last
week because of a problem with my arm (I can phone the Specialist Nurse up
there and see him within the hour if I need to.) He asked again how I was doing
on Ciclosporin and before I had a chance to answer, he said, "Not too good
eh?" (I must have been looking good that day eh? Lol) So he said he would have
a look at my records and talk to Dr Marshall. I have not heard anything else
from them but I have the quarterly appointment next month I think so fingers
crossed. (Well, I find it a bit difficult to cross my fingers nowadays but
you know what I mean. Lol)
You wrote:
Next went to osteopath who said that he could fix me in
3 visits. After 4th visits he gives up and says he's not a miracle
worker - nice man!
I loved the way you put that. That will teach him not to make sweeping
statements. Lol
Hope the Remicade works well for you.
Take care,
Martin

Hi again everyone,
Someone on the Fibro group talked about Angels for hope. It is a
volunteer organization that makes Angels, Smiley faces and something
else for those with terminal illness, chronic disease and personal
loss. Please check out this site it is quite wonderful. The crocheted
figures are free to send to those suffering.
www.angelsforhope.org
Pat

This is Caroline Stronge, I read all the postings that come through but seldom
post myself. I am considering taking my daughter Samantha (15 yrs old, RA
since 2001) to see Dr Franco at the Arthritis Center of Riverside in California.
I would be interested to hear from anyone generally, but particularly from
Australia or New Zealand (which is where we live) who has been there and in
particular would like to know how the long distance follow up worked.
Thank you for taking the time to read this and I look forward to any feedback
whatsoever!
Caroline Stronge.

Hi Melanie
Reading your letter was like I wrote it myself...... Everything that is
happening to you is the same for me, I am on the AP now for 3 months, generic,
will start enbrel next week, weaning the prednisone, tried everything else, but
now, nothing seems to work, enbrel is helping a lot of people, and it doesn't
seem to interfere w/ the AP. I wish you the best and keep writing and let us
know.... Nicole
Melanie <trickers@...
Hi all -
I do a lot of lurking and read emails when I can. I like the increase in list
traffic although I find it hard to keep up sometimes (summers are very busy here
in Alaska).
I did want to make some general comments for those who are new to the list. I've
been on the list for over a year now, been on AP since February 2005.
The reality of what we're dealing with forces us to become our own doctors in a
way. In my case, there are no rheumatologists in my area and I think that there
are no longer any in the state. Added to that is the somewhat sad fact that I
have no health insurance. So when I flared up into my first recognizable signs
of RA and was subsequently diagnosed, I had to do my own research and basically
choose my own path of treatment. This treatment was in part what I believed to
be the most logical for someone of my age (I'm in my 40's) and for someone of my
financial means.
I'm lucky in that my general practitioner is very open minded and is willing to
treat me with respect when I come in with my various ideas and requests. I try
to always give her the same respect and to listen to her recommendations and
ideas. I also try to always back up my requests in treatment with information
that I have found online or elsewhere - information that I bring to her in
printed form along with the links or sources so that she has something to look
into. And from the beginning, when I asked her about AP, she was supportive of
my choices. It wasn't something she had ever used, but she checked around and
found that Mayo Clinic was now prescribing antibiotics to patients with RA and
that was good enough for her.
After discussing it with my doctor and with various people on this list, I also
chose to go onto plaquenil. It isn't something I wanted to be on long-term, but
because the antibiotics take so long to work I wanted to avoid as much damage as
I could in my joints. I had initially been put on methotrexate too, and I chose
to go off of that and continue on the plaquenil. Some people say that is wrong -
in my case, I chose it because I felt it was right. I am the only one that is
responsible for my treatment and I have to make the choices that fit for me.
I spent the first three months on the AP pretty much bedridden, which was
miserable. I managed to work (luckily could work from my home) but it was
limited. Most days I stumbled around on oxycodone because I was in so much pain
that even just rolling over in bed was an exercise in agony. And after three
months of that, I went to my doctor and I asked her to put me on prednisone. I
didn't want to do it, I had held off all those months hoping that something
would change - but I needed to have my life back. She had never pushed it on me
but had made me aware of its availability, and I had researched it online. The
side effects scared me, but then again at that point I had no quality of life
and was fading into oblivion in many ways.
Three days after starting the prednisone I was up and doing yard work. I was
weak - three months laying in bed will do that to you - but I was up and as
close to pain free as I'd been in a long time. Within a week I was pretty much
off the daily oxycodone too - I had been up to six pills a day just trying to
exist. I went into the summer with an ability to move and it was mentally good
for me as well as physically.
Of course, the side effects of prednisone soon started to show up as I quickly
gained weight. I was never particularly thin anyway - always fought with my
weight - and in the course of the next eight months I gained about 70 pounds.
Not a pleasant thing! But in the middle of gaining that weight, I was active and
able to do the things I loved to do. I traveled to a dog show. I played with my
niece and nephew. I worked almost full time. I had a LIFE.
I quickly weaned down to a low dose of prednisone but I have not been able to go
completely off of it without running into considerable pain. In February of this
year, I chose to switch antibiotics. I had been on doxycycline (with some mixed
reviews .. some people said they had good luck with it, some said it wasn't as
likely to work as minocin - but it was what I could afford). I switched to
minocycline, but with the brand name minocin costing $630 a month as opposed to
the generic minocycline at $60 a month, I went to the generic. Will it work? I
don't know yet, I'm still waiting. It's been 17 months since I first started the
antibiotics and I can't tell if anything has helped. In part that may be because
I've been on the other drugs - but without those drugs I couldn't function.
And now I've chosen to take yet another step, in order to try to get off of the
prednisone. I stopped the plaquenil last week. I was able to get on a program
that provides Enbrel to me for free, for at least awhile. I looked into the
drug, researched what I could find, talked to my doctor, etc. The potential side
effects are not nearly as bad overall as they are for prednisone. My doctor says
that she has never had a person on Enbrel that didn't respond really well. And
so I started on it yesterday, my first shot.
My goal in all of this? To get to the point where the antibiotics have truly
worked, but to continue to function and work in the meantime. I have no choice -
I HAVE to work. There is no one to pay my bills except for me. And with no
insurance, I have to pay for everything out of pocket or find a manufacturer
willing to work with me. The manufacturer of minocin has recently changed and
they are not part of the PPARX set-up, so it's not something I can get. I am
hoping that the Enbrel will allow me to get completely off of the prednisone,
and that it will co-exist with the antibiotic without keeping it from working. I
can't find any research that indicates that Enbrel will inhibit the antibiotics.
So if I can use this time to get off of the other "bad" drugs and to let the
"good" drug work, it is well worth it to me.
My point in all of this is that each of us is an individual and each of us will
have a certain mixture of treatments that will work. What works for one may not
work for another, and some people do have to make decisions based on finances
and their own quality of life. I see some people saying "you need to do THIS"
and in all honesty I don't think any of us can say that to another and be
completely right. There's no way we can assess a person's health, physical and
mental stability, financial limitations and quality of life just from a few
emails. Not only that, but the treatment that works for one person may or may
not work for another.
The only thing I can say definitely is that we each need to be our own
ambassadors in our treatment. We need to try to be informed and to find a doctor
who will treat us with the respect that we deserve. And once you do that, you
have a wide range of treatments available. I do believe in the antibiotic
protocol and I hope that it will work for me. But .. the quest for good health
can be a long one and we all need to live in the meantime, so we may have to
make some choices that we'd like to avoid.
Just my honest opinion.
Melanie in Alaska
.. by the way, I also did some diet modifications, supplements, etc. But there
are some of these things that make no sense to me - some of the suggested
supplements and holistic treatments. You can spend just as much money on all of
that stuff as you do on medications too. It all has to fit for each individual.

--
Hi Janet,
welcome back:) I am gaining weight too. I put on about 12 extra
pounds with remicade and now have added another 7 with enbrel...I've
never had a problem with weight before . It is discouraging and I
must say that the docs that knew me when I was thin seem to
understand but when I see a new doc they look at me as an "overwieght
middle aged woman" Used to be I gained a little and then got control
and lost it but I really have to fight with the weight now.
Glad you survived Jeane,
Marti

Hello!
I am a representative on the Utah Arthritis Board and quite possibly
the youngest member. I am 31 years old and was diagnosed with
Rheumatoid Arthritis 2 years ago.
I have struggled to find people who are living with Arthritis (of
any form) in my age group. As you may know, most of the programs
are directed towards the older generation. Which isn't a bad thing
since there is a large percentage of the population in that age
bracket suffering with Arthritis.
BUT, I would like to provide an avenue for young adults (age: 20-50)
to present their concerns and to share their experiences!
I think it would be wonderful for us to join forces in helping so
many across the country cope with Arthritis. I saw your site and
was impressed with not only the numbers but your activity level as
well!
If you are interested, please check out our site and I will do the
same for you too. I will put a link to your site on my groups
page...if that is okay??
My site's address is:

Hi Fran,
I haven't been on for a few weeks since I was away and was wondering what
you decided to do after your last experience. Have you decided to go to
anymore clinics? I was given Bextra after the Vioxx experience but now I am
hearing that the problem is with all Cox-2 inhibitors and not just Vioxx. That
would be Bextra and Celebrex as well. I heard that there is just not as long
a time amount on research as Vioxx and these too will be discouraged. I am
presently taking Naprosyn and it seems to help somewhat. My rheumy took me
off double Humira since it did nothing and tomorrow I will be receiving double
Enbrel in the mail. I hope that is going to be my magic potion.
Janet

Welcome Jennifer,
sounds like you have a LOT to deal with! glad you wrote. I agree...
by wrting you are taking an important step in facing and dealing with
your disease! good going..:) Hope you can find a good rheum that
will help you develop a treatment plan that fits your needs!
best,
Marti

In a message dated 10/29/04 8:52:21 PM Central Daylight Time,
mickysz@... writes:
I believe Vitamin D is one of the biggest clues to the
effects of PA because of the good effects we have when we get a bit
of sun.
I think too that there is some relationship there and have studied through
many of same indicators you have mentioned such as fish oils etc. I havent been
able to determine the king pin in the whole menagerie of systemic
malfunctions. We know that for most with psoriasis of the skin that exposure to
sunlight
or more specific wavelengths of artificial light is beneficial and it is well
documented that exposure of the skin to that type of light does increase
synthesis of vitamin D. That led to experimentation and creation of Dovonex
which
is the Vitamin D derivative used as a topical treatment for psoriasis you
mentioned in your previous message. Dovonex is somewhat effective, as much so
as
just about any other topical. Use it if it helps but like all other
treatments that I know of it is apparently treating the symptoms and doing
nothing to
correct what caused them in the first place so that when treatment is
discontinued the symptoms return. I hate to promote the idea of conspiracy but
there
would be a lot more potential financial gain by development of an effective
symptom treatment than for an effective cause treatment and I wonder sometimes
how much that affects the course of research. Another thing to throw into the
mix when thiking along those lines is why do some synthetic hormones have
positive effects on psoriasis? For example Cortizone, a man-made chemical that
acts
much like the natural cortisol and the many other Cholesterol derived steroid
hormones created in the body by the cortex of the adrenal glands. If these
man-made chemicals that are designed to mimic the certain actions of chemicals
that are produced by the adrenal glands have proven in many ways to be
beneficial to treating both the skin and other systemic symptoms of psoriasis
then
isnt it obvious that great attention should be paid to understaning the
functioning of adrenal glands as they may relate to the course of psoriasis?
Is it a
genetic defect in the adrenal glands? I havent read a single text which
related the two. Is it a deficiency of the raw ingredients the adrenals need to
make
one or several of the hundreds of specific chemicals they are supposed to
make? Is it one of the signalling chemicals produced elsewhere in the body that
influence the ratios and quantities of hormones the adrenals make that is at
fault, errant signals sent to the adrenals? What effect might repetitive
severe strep infection of the upper respiratory system have on hormone
regulation
and/or production? How do emotional factors effect the production of hormones?
Why do instances of acute starvation improve psoriasis. Why does peritoneal
dialysis improve psoriasis? There are so many indications that implicate the
adrenals as being at fault in psoriasis but I have been unable to find
information on any studies conducted to identify the correlation. Orin

-Hi Pat,
It can be so frustating to change rheums. the first rheum puts you
on meds that help control swelling and the second rheum looks at you,
doesn't see swelling, and attributes pain to fibro rather than pa.
The pain in neck (besides the doc...ew sorry) and lower spine can be
pa and as your first rheum said...the fibro is secondery....keep
fighting to have the pa treated!! Or at least looked at for possible
pa.
I am concerned about you trying to lift the students as well...I
don't know if you can come up with another option.
take Care,
Marti

Vent as much as you need, Pat. It's a friendly crowd.
(And we know just how you feel -- we've been there.)
Be polite but insistent until you get a real
appointment with a real doc who can evaluate all the
parts of your puzzle and help you find the right
treatment. You might see if you can find a different
rheumy on your insurance plan. Getting different meds
from different docs -- and over the phone -- is
dangerous and ineffective.
-- Allison
=====

Triax, who now has Minocin, has a patient assistance program. The site below
has an application form. Hope this is helpful to some of you.
http://www.needymeds.com/papforms/triaxp1081.pdf
Mary
_

In a message dated 10/31/2004 7:30:57 PM Eastern Standard Time,
orinok@... writes:
There are so many indications that implicate the
adrenals as being at fault in psoriasis but I have been unable to find
information on any studies conducted to identify the correlation. Orin
Orin...I have read a little about this in some German sources (I think the
dialysis treatment for PA is done there more frequently than here)...I'll try
to look for some of it again and translate it!
Rachel

Congratulations on finding a doc who treats people and not symptoms. Yeah! I
started 12/05 with 50mg MWF then went to the A/P doc in Boston and he ramped me
up to 100mg twice/day everyday. Been on it ever since. Ditch the Plaquenil.
You won't need it. Minocin is also an antinflamatory and the pain will ease up
by itself. You won't need NSAID's either for the same reason. Besides they
irritate your esophagus and stomach. But so does Minocin, so add some
acidophillus to your daily regimen, but not at the same time as the Minocin.
Remember the two hour window of no food before & after the Minocin dose. I
cheat a bit sometimes, but only when I'm really hungry because I am also a
diabetic and don't want to pass out from low blood sugar. To kill the hunger
pangs, I drink a lot of water, tea, weakened juices like cranberry with water.
As far as the blue color. Your skin will darken. Right now I look like I just
got back from the Bahamas. It annoys me most of the time,
but I grin & bear it and smile when people comment about my tan. I got it in
bed and under my umbrella. My toes took on an almost purplish brown color. The
sun is your worst enemy so cover yourself up. It's because, the skin is more
sensitive to sunlight which converts to Vit D. So, eliminate all vit D
fortified foods and milk products. On that one, I cheat a little too. I love
chocolate, so I sometimes make myself a hot chocolate at night with a little
milk in it, but mostly water. I buy the organic chocolate put out by Trader
Joe's, Hersey's Powder is good too. It's pure chocolate w/o any additives. I
may have maybe two or three cups a month. I did very well, almost miraculously
well for 7.5 month's, then I started having problems with my heart. I have
internal as well as external S/D and R/A and just found out I also have sero-neg
sarcoidosis. Before I knew I was sick, my lungs were already sclerosed and I
have been having heart problems for about 7-8 yrs.
before diagnosis. I've had 4 heart surgeries. So, I suspect they were only
able to diagnose me when the S/D showed up on the skin. It was internal all
along and finally came out and then I tested sero positive to R/A. The S/D was
obvious. What I have against me is my age. I just turned 70. Longevity runs
in my family, so I thought I'd be okay for at least 20-25 more years. Now I'm
not so sure. The lungs & heart are treatable. But if the kidney's go, I'm a
gonner. Still, I don't think I would still be here if it were not for A/P. It
has not only prolonged my life so far, it has given me a better quality of life.
I am a nurse, and still work part-time, travel with my fabulous husband of 31
yrs. and party all the time. I sleep when tired and groan when I ache, but what
the hell, I've done it all and am still here. So, go for the A/P and go for the
long haul. Don't give up at the first sign of a herx. Hell, we don't have too
many other choices, do we! Nothing to
lose~~~~Dolores in NYC
dsaamcbee <dsmcbee1@...
My Rheumy thinks the AP is a quack thing to do so I took many of
your advice and asked my GP. She researched it and called me back
telling me it was a 'win win situation'. That it could not harm me
and many acne patients take the same meds for many many years. She
called me in a prescription of 50 mgs of mino. She told me to take
it daily. I spoke up and mentioned that I read many people take it
MWF so she said, 'OK, we'll try that'. She is pretty much going on
what I've researched and what little info she's researched. I'm
thankful for her willingness to do this. I will be her first to
treat with AP. (She actually couldn't believe she hadn't heard of
it).
My question - what is the better dosage? She will support me in
that decision b/c she is new at this too. All she says is if I
start having trouble she'll back me off of it. She is worried about
the herx reaction. However, I'm very mild and haven't had this but
only a little over a year and half. I know you all aren't doctors
but I think you know the basic dosage and what can happen and such.
Any advice would be greatly appreciated.
One last thing.... what about the skin coloring? I remember someone
mentioning blue skin?? Can anyone help me learn about this? And,
will staying on the plaquenil and NSAID effect the antibiotics?
Please advise. Thank you all so much!
Serena
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

In a message dated 9/10/2004 9:10:37 AM Eastern Standard Time,
darrenh1974@... writes:
I would like tips on dieting and exercise whilst dealing with PA
Hi...I find I do better with no gluten (wheat, rye, barley) in my diet...the
benefit in addition to feeling better is that I lost 25 pounds when I cut
gluten out of my diet...

Tell 'em you're taking Methotrexate and the dosage,
and they'll usually whip out the needle like that
<snaps fingers. ow.) if they have any vaccine
available.
Even if they don't understand PA, they understand the
dangers of an immunosuppressant during flu season.
-- Allison
=====

Hi,
This is why I said in my earlier email not to worry about labels. So many
of them don't know what the heck they are doing so don't trust they know it
all. They are winging it. They give you a label and that lets them know
which meds to write the script for. They don't always know this but they
are. Don't let this guy mess with your head; you are going to be OK. But
you do need to continue your quest to get the Minocin.
If you can get the Minocin it will all change. So that's all I'd try to do
... get that Minocin. You may have to play along; i.e., take the piece of
paper/RX for Plaquenil to placate him; don't fill it; call him in a week and
tell him it makes you deathly ill; read about the side effects and tell him
you got a couple of them .... and tell him to call in an RX for Minocin
since you've tried all his meds and they don't work for you. And if he
won't help you tell him you are going elsewhere ... and go to an internist
to see if you get better results. ... another thought - do any of your kids
have acne? See if you can get Mino for them and then take it yourself.
Fight dirty. Do whatever you need to get the Mino. I'm not kidding. El

---
Hi Pat,
Thanks so much for this website. I asked for an angel to be sent to
my husband's uncle Paul that has a rare liver cancer that attacks the
ducts in your liver-he only has about a month to live and only was
diagnosed this past September. We are all praying for him. When I'm
with him it makes my PA seem like a minor disease compared to his.
I also volunteered to crochet 2-4 angels a month for them (angels for
hope) to send to others-I can as long as my hands stay movable.
Thanks again and God Bless, Sue.

Me on Psoratic Arthritis
Stiff and swollen,
burning yet frozen
ready to snap and
over inflated, a
branch in winter
after a warm spell
has receded fiercely.
Weary and weighted,
heavy, but empty
in need of sleep while
wanting to engage
with a life that is
moving and still,
in a body reseeding.
Scaled and smoldering.
grayish flakes of red
itching for removal
and creeping upward
but downward, and all
in-between, the end of
such smooth beauty
Tired and terrified,
agreevied yet present
searching for reason, yet
finding a purpose to
what is or isnt any
longer, as the beautiful
seasons move ever onward.

For the first time since I've been dx'd with PA (8-10 yrs) I'm going to a
conference in Minneapolis alone. I'm really concerned because I can only walk
upright about 3-5 minutes without having to stop and restretch my back. I'll be
gone from Tuesday to Sunday this coming week. At my husband's suggestion, I'm
adding a half day at either end of the conference to rest for the next leg of
the experience and I'm traveling at off hours..
Does anyone have any suggestions/advise on how to manage this alone?
BTW, I have spondylitis, in addition to PA in hands, one knee, and shoulders.
I'm a brittle diabetic, have intermittent claudidation, chronic bronchitis, and
a few other miscellaneous ailments. I look healthy as a horse and built like
one too; so I'm concerned about getting help at the airport. My druggist is
shipping all my medical necessities except for those I need on Tuesday directly
to the hotel. Everyone is on the lookout. The hotel has even called me to
verify what is being sent and what I need that they can furnish. The conference
has found a free scooter for me to get around on.
So I'm only worried about the airports.
Sandy, swOhio
[Editor's Note: Contact your airline. All major airlines will arrange to meet
you at the door of the airport with a wheelchair and then take you through
check-in, security screening and boarding. At the other end, they will meet
your arriving plane with a wheelchair. If you have to transfer to another
plane, they will wheel you to the gate. They will take you to get your luggage
and will wheel you to the taxi line or the hotel's van. I travel for business
regularly, but when I am "in a bad way" and need assistance, I make these
arrangements by calling the airline ahead of time and I've found that the
airport is the easiest part of my trip. Good luck. Kathy F.]

Kathy --
I know the regular flu shots use dead cells and are
okay for us to use, but I've heard that the
alternative inhaled vaccine (FluMist?) uses live
virus, which we should avoid. I suspect that everyone
in the household should avoid as well. Can you
confirm?
BTW, my pharmacist said folks lined up hours early for
his first flu shot clinic last week. If you can't get
an appointment, plan on spending time standing in
line...
-- Allison
[Editor's Note: Yes, Flu Mist uses LIVE vaccine. The Government's directive
regarding priority for the dead cell vaccine includes immune compromised people
(that's us!!!) so you should be able to be given the injectible, although you
may have to get on a long waiting list. We are eligible to receive the
injectible vaccine because of our whacky immune systems. Your rheumy may even
have access to this vaccine since he treats immune-compromised patients. Do not
take Flu Mist without consulting with your physician. Some live vaccines may be
tolerated well by immune-compromised people while others are not. Kathy F.]

I found this group on Sep 1, 2004 but have not posted anything until
now. I would like to say being diagnosed with PA has been
devastating to me. My name is Elaine, I am 54 and I live in Ohio. It
is time to say Thank you for all the good information. It has
helped me so much. It all started with my knee being swollen last
November, I go to GP and he sent me for a MRI and Orth DR. He drain
it and a shot of Cortisone. Then I noticed dry skin on my legs and a
patch on my arm, my scalp was also dry in the back, not all over. I
really thought it was because of the cold weather. Then in February
I was shoveling snow and slipped on the ice, hitting my elbow
pushing my shoulder up into the neck and hitting the back of my
head. It sent a shock thru me. I also retired from Government
Civil Service in Feb. I am thinking I am going to travel, going to
see the Grandchildren one in Washington State and another in
California. I started Curves, two days later I could hardly walk,
and both knees started swelling. I called the orth Dr he gave me
Bextra to reduce the swelling. It did not work. So he drained both
knees 2 weeks later with shots of cortisone. The dry skin started
to spread on my legs and scalp. So I go to the doctor (my GP
partner) in March and he sees my knee swollen and the dry skin (now
some places on my face) he tells me he thinks my body is attacking
its self and run all kinds of blood tests. He prescribes
Methylprednisolone. 6 days later his nurse called and has
prescription for NAPROXEN called in and is going to make an
appointment with a dermatologist. I stop taking the Bextra while on
NAPROXEN. I am miserable, can not sleep. The pain is really bad. I
go for my yearly physical (April) with my regular GP he is shocked
to see my condition, Knee swollen, rash on legs and arm and the
scalp. He has more tests done, x-rays of the neck, EKG. The x-rays
showed 3 bone spurs in the neck. The Dermatologist says I have
eczema and he gives me elidel, olux and asulferidne. I went for my
follow-up with my GP and it was like a light went off. Psoriatic
Arthritis. He has only seen one other person with it in his medical
career. He gave me Prednisone and told me to stop everything else.
I took it for two weeks. It did not do anything. I noticed my big
toenail has the Psorsis. I have the overlay (harder) put on my
finger nails. Went to see a Ryumetologist. There's more test, more
x-rays, before he will give me anything. Finally 25 June, I start
MTX 4, 2.5mg a week, Celebrex, Folic Acid, Calcium and vitamin.
The pain is almost unbearable, I would be crying and wakes my
husband up and he is in another bedroom. He feels so helpless. I
did that for 2 weeks and the pain was so bad, I called the rym they
up the MTX to 5 pills a week 2 weeks later still pain in the knee,
I could hardly walk, changed from Celebrex to Vioxx and MTX 6 pills
a week. I felt nothing but pain, no side effects from any of the
medicine. The rym said try Physico Therapy, did that for a month.
Still nothing helps. The Dr did give me Darvocet for the pain. I
could not tell. The Psoriasis did get better, I was out in the sun
a lot and the medicine probably did help. In Aug my left knee
starts to swell, the right knee is 4 ½ inches bigger. The very next
week the right wrist starts swell, the thumb looks like a sausage
and painful. Now 7 MTX a week. I am supposed to be getting better
and this mess is getting worse. My GP gave me vicodin, and it did
not touch the pain. Then I find this group and feel really bad
reading that some of you have had this for years. I have learned so
much. I went to the rym 8 Oct 04 Friday and started Enbrel
injections, I am taking the 7 MTX, Celebrex, Folic Acid, Calcium and
vitamin. Monday, three days later, I have a new lease on life,
there is no pain, and the swelling is going down. Thank You.
Thank You for listening. Elaine

Hi Mom or Dad;
This is a terrible disease if one just follows the rheumatologist's
advice.On the "GREAT" side of things is that AP works wonders for SD.You
might want to read up on how people respong to this treatment at
www.roadback.org and then go to their bulletin board.There are a lot
more people with SD on this site and you can get a bigger picture of how
it is treated.Lovely bulletin yeaterday from an old timer who is in
remission. Lynne

In a message dated 10/23/2004 4:30:08 PM Eastern Standard Time,
cookie6@... writes:
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.
Hi Leanne,
Has anyone recommended physical therapy for Owen's back? That really helped
me when I was first diagnosed and in incredible pain. I did a combo of
regular PT (a lot of back strengthening exercises) and aquatic therapy...
Best of luck!
Rachel

Hi Serena, I too get cramps, not only in my toes, but calves, legs and thighs.
Sometimes they are so bad, my legs are sore for days. Then it goes away and
just when I have forgotten about it, one toe starts all over againl As far as
the menses part, I have no idea. I'm post menopausal. Had a hyst. when I was
38 and now I am 70. That was too long ago. Take care Dolores
dsaamcbee <dsmcbee1@...
I have a few questions. I've been doing so good all summer with
only mild symptoms and now it seems I'm in a flare. I've been
noticing pain in my feet - the bottom of my feet (this is new pain)
and my calf muscle is sore and feels like it could cramp at
anytime. Also, I've had cramps in my toes. Anyone ever have that?
Forgive me for bringing up a personal matter but I'm pretty
desperate for advice. My major concern is that during menses I go
into a flare and hurt all over. It's so much worse that week
compared to the rest of the month. It's like night and day. I just
want to know if anyone has an idea about why or how to treat it
during that time.
I'm not on the AP yet. However, I'm gaining ground (not with my
rheumy but with my GP). She never heard of it so when I told her
about Dr. Brown, she immediately started searching the web (while I
was in the exam room with her) and said she'll research and give me
a call in a week or so. She was amazed that AP wasn't taught after
reading about it for just a few minutes. She also said, "That's
standard treatment for acne sometimes for life so why would it hurt
someone to try it for arthritis?". She sure was amazed that she
hadn't heard about it. So, I'm encouraged that I'll get help from
her.
Anyone with answers for me, I would really appreciate it. Oh, one
last question, if my blood work is done during menses, will it show
something that it normally wouldn't??? Anyone heard of that?
Thanks for your support!
Serena
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Dear Katie
I see that you are worried about your diet. The elimination diet is one good
way of finding out what foods you are allergic to, you should also write in a
calendar what you ate the night before if you wake up with extreme pain the next
day, or if the pain starts after lunch; that way you will be able to check
later.
Another way of finding out what foods are affecting you, is by getting a blood
test. There are a few labs that do this test, one is the Great Smokies
Laboratoy, (www.gsdl.com) now known as Genova DX; another is metametrix.com.
Go on the internet and if you call these two labs they will tell you what doctor
in your area can do the test and has their test kits. I think metametrix
charges much less for the test, but you should check with the doctor.
I did this quite a few years ago, and it was wonderful to find out quickly what
I should not be eating. The results showed I was severely allergic to milk
(both cow and goat milk), moderately to gluten, citrics, plus a few others and
slightly to about 20 other foods. Within a week of not eating any of those the
pain was much less. Hope you feel better soon Lucy

In a message dated 10/31/04 8:31:27 PM Central Standard Time,
rachelviognier@... writes:
I have read a little about this in some German sources (I think the
dialysis treatment for PA is done there more frequently than here)...I'll try
to look for some of it again and translate it!
Thanks I will appreciate any info you can share on the topic. I will say if
it is done at all in Germany that is more than in the USA. Not performed at
all for that purpose here due to risk of serious complications, just noted as
having eliminated psoriasis in a few patients by a nephrologist who treated many
diabetic patients requireing dialysis. Orin

I know this is a dumb question....I am eligible for social security (almost
64). Recently I filed for it on line. Somewhere it asked if I were able to
work (or something like that) and I responded no..and I'm not...but that
threw the whole process into a different ballpark....get medical records,
blah, blah, blah. If my husband pre-deceases me, I guess I would want to
claim his social security. However, before I call the SS office and say
scrub my answers and let me start all over, maybe I should follow through on
claiming disability???? I really haven't worked in over 10 years....only
half those years have I been unable to work.
Before I do anything rash....any advice? I know almost zip about how this
process works.
Liz T

Ok...so I have been thinking about my upcoming appt. with Dr. W. in
New Jersey. From what I hear, it sounds as though I will have to
steer the direction of the appt. so I guess I will need to be clear
about what I want. (What I want is for a doc to actually take the
lead in getting me well by looking at the big picture...but since
that seems unlikely, I need to be prepared to take the lead, and
know what I want).
So, in a nutshell...Minocin and NSAIDS(and 1 yr of doxy for a break)
knocked out virtually all of my crippling joint pain in about 8
months, 5 years ago. For a decade prior, and since then, I have been
dealing with various levels of fatigue and muscle aches, and throat
ulcers which have worsened over the last few years. The worsening
seems to correspond with increasing issues with yeast (and STRESS!).
Short bouts of Diflucan make me feel almost human, but no-one will
prescribe for the long hall...thus my appt. with Dr. W. I have
started on Armour thyroid...too early to tell.
So...I know I need to ask for Diflucan. Without asking anyone
to "prescribe", what would be the appropriate dose to ask for to
finally get this yeast thing gone for good??? I would like to hit it
hard with daily Diflucan (or other antifungal) and then taper
down/off. Is that a reasonable request?
Also, I don't feel the Mino alone has completely gotten rid of my
mycoplasma and/or other bacterial pathogens, despite the absence of
obvious joint inflammation. A Z-pak or adding Doryx seems to get rid
of my throat ulcers when they flare, which makes me believe they are
bacterial in origin. For the most part they are supressed by the
mino, but not completely.
I was on Zithromax twice a week in 2001, but I was herxing so bad, I
couldn't tell if it was helping. I just knew I felt like dying.
Anyway...clindamycin does what??? Would that be a reasonable request
to see if we can tweek these last bacterial buggers into submission.
What dose and how does it work differently from the Mino? Are there
other options I should look into? I need to know what to ask for,
and to be able to back it up.
Any ideas???
Also...a request for the moment. At this time I am really just
looking for medication answers to ask the dr. I have read about and
use tons on supplements etc. That's NOT what I am looking for at the
moment. (just trying to minimize what I have to sort through)
Thanks alot...
peggy

Karen in Okla, please contact me off-group. I am in OKC and would like to talk
to you more in depth about this Psoriasis/depression/antidepressants issue.
On group--which antidepressant did you use and the Psoriasis developed? I think
everyone could benefit from this info. You might even be on to somehting.
LeAnn Cayer & Furbrats Blossom & Meriko
Heart Bandits American Eskimo Dog Rescue
Oklahoma Referral Chapter
Railroad Coordinator
www.heartbandits.com

Welcome Elaine and it is wonderful to hear your
success.
Karen (Oklahoma)
=====
Shalom

Martin,
Shame on you even suggesting that someone with PA could pick you or anyone else
up.
Sandy swOhio
martincoyless@... wrote:
Hi d,
I don't know if you will be able to pick me up at the airport but I arrive
in Tokyo tomorrow at................... only kidding.
I don't have any update on gadgets yet as I was away last week but I would
expect to hear from the girl dealing with it sometime this week.
I will keep you informed.
Thanks for your comments. I think we have got to try to keep smiling haven't
we?
Take care,
Martin.

Hi everyone! I was hoping someone would have some experience with
rumatoid nodules? I saw my Rheumy today and he said the odd bumps
on my elbow and behind my knee are rumatoid nodules. They are
fairly painful (but what isn't these days) and he said they won't go
away. He can't remove them because they will grow back. Has anyone
else had this?
Also, I finally had to move to narcotic pain relief. I had been
avoiding it since I am in recovery from alcoholism (7+ years) but I
just can't get by anymore without it. I am taking one percocet at
bedtime. I was supposed to start Remicaide but my SOB boss told me
that if I miss any more work because of my "illness" he will have to
let me go. The Remicaide would require me to miss 3 hours a month.
Since I am now a single mother I can't afford to take the risk but
boy am I mad. I think people hear the word "arthritis" and think
it's not a real big deal. They have no idea what it's like to live
like this every day. I asked if he could at least move my office to
the first floor so I wouldn't have to do the steps and he said no.
Makes for a wonderful working environment.
Any feedback would be appreciated.
Heather

Peggy, As far as the yeast or candidias goes. It is commensal flora until
there is overgrowth from an imbalance this will continue to occur as long as we
are on the antibiotics. Our goal should be to keep in check, The Diflucan can
help achieve this but you will again keep it from taking over. Again, In the
gut when it is not disturbed by an imbalance it is part of the normal flora.
The antibiotics that keep us going do cause and imbalance. I'm not saying don't
take it. I take Sporanox as needed a similar RX for the same purpose. It is
important with both the Diflucan or Sporanox to watch Liver enzymes as these
both can be Hepatic Toxic at high doses or with extensive use. Emeritus
Adjunct Professor of Laboratory Science, Carol Fisch
In a message dated 8/11/06 12:34:16 PM Eastern Daylight Time,
pegasus_83@... writes:
Ok...so I have been thinking about my upcoming appt. with Dr. W. in
New Jersey. From what I hear, it sounds as though I will have to
steer the direction of the appt. so I guess I will need to be clear
about what I want. (What I want is for a doc to actually take the
lead in getting me well by looking at the big picture...but since
that seems unlikely, I need to be prepared to take the lead, and
know what I want).
So, in a nutshell...Minocin and NSAIDS(and 1 yr of doxy for a break)
knocked out virtually all of my crippling joint pain in about 8
months, 5 years ago. For a decade prior, and since then, I have been
dealing with various levels of fatigue and muscle aches, and throat
ulcers which have worsened over the last few years. The worsening
seems to correspond with increasing issues with yeast (and STRESS!).
Short bouts of Diflucan make me feel almost human, but no-one will
prescribe for the long hall...thus my appt. with Dr. W. I have
started on Armour thyroid...too early to tell.
So...I know I need to ask for Diflucan. Without asking anyone
to "prescribe", what would be the appropriate dose to ask for to
finally get this yeast thing gone for good??? I would like to hit it
hard with daily Diflucan (or other antifungal) and then taper
down/off. Is that a reasonable request?
Also, I don't feel the Mino alone has completely gotten rid of my
mycoplasma and/or other bacterial pathogens, despite the absence of
obvious joint inflammation. A Z-pak or adding Doryx seems to get rid
of my throat ulcers when they flare, which makes me believe they are
bacterial in origin. For the most part they are supressed by the
mino, but not completely.
I was on Zithromax twice a week in 2001, but I was herxing so bad, I
couldn't tell if it was helping. I just knew I felt like dying.
Anyway...clindamycin does what??? Would that be a reasonable request
to see if we can tweek these last bacterial buggers into submission.
What dose and how does it work differently from the Mino? Are there
other options I should look into? I need to know what to ask for,
and to be able to back it up.
Any ideas???
Also...a request for the moment. At this time I am really just
looking for medication answers to ask the dr. I have read about and
use tons on supplements etc. That's NOT what I am looking for at the
moment. (just trying to minimize what I have to sort through)
Thanks alot...
peggy

Leanne,
I agree......NOTES, NOTES and more NOTES. I do the same thing.
I'm also a firm believer in bringing someone with you to the
doctor. I'd been to my primary care doctor so many times...she had
no clue of what was wrong with me other than as she put it....and I
quote "some kind of migratory inflamation". Initially she suggested
an over the counter pain reliever. Then she sent me to an
orthopedic surgeon, then to physical therapy. I was in very bad
shape and was getting worse by the day. Knowing what I now know..I
can't believe she didn't immediately refer me to a Reumatologist. I
thought I must be going crazy and for some reason was embarassed to
go back for the umpteenth time. It wasn't until I told my husband
that I thought I might be dying that he insisted on going to the
doctor with me and insist that she refer me to somebody who could
figure it out. My crying wasn't enough....she needed to hear it
from a man to take me seriously.
Mary

I recently went to the Mayo Clinic in Scottsdale, AZ. It was an awful waste of
time and money. I do not recommend it to anyone with a serious medical issue.
The primary physician was not knowledgeable about Rheumatic conditions.
Clearly their first and main priority is business, the patients welfare comes
a distant second. I was never even scheduled a visit for me with a
Rheumatologist for the 5 days I was there. When I intervened and insisted upon
it later in the week, I was told it was too late to see one that week. The
finance people tried to talk me out of most my scheduled visits within the
clinic when I suggested it was too costly. They did not offer financial
assstance, only a reduction in whom I was to see. I am not insured for this. I
had contradictory advice about what to do and who to see and nobody there to
address my concerns. They are all about making money. They do not care about
good medicine or the patient's welfare.
I did see some good practitioners such as a physicians assistant in
Rheumatology, and others knowledgeable in their field, but not a Rheumatologist
MD. Certainly that was not worth the $10,000+ I was told I'd be charged for the
visit. Over $4000 just for an MRI just of my feet and ankles. My knees, which
are hurting me as we speak, were NEVER examined despite my protestations. Most
of my medical reports are missing, I never received them, even after faxing the
clinic. Nor did I get any written or practical advice for follow-up care.
Do not go to this clinic. It is an affront to people with a medical problem,
esp. Rheumatic, and to human beings everywhere.
Daniel

Hey, nice to speak to you.
My son had to try Mobic a few weeks ago, over the last few months
he's tried about 5-6 NSAID's.Besides the fact he didn;t really
tolerate it well (vomitting constantly around day 5), we didn't find
it to be of any use.The lottery of what works is hard.Even if you can
tolerate Mobic or others, what may help 1 week- may then do nothing.
Currently, good old Naprosyn is calming a bit of the 'angry' down.
Not great, but a little bit helps.
Good Luck
Leanne

I think I responded to you earlier this year when you asked if anyone had
experience with the Mayo Clinic.
I said that I had a very unpleasant, non-productive, and very expensive
experience with the clinic in MN.
I found them to be of very little help, but they sure did want their money.
It was a long, tiring, expensive experience that brought me little or no help.
They seemed to be totally unconcerned with helping or even being nice to the
patients. I was in very poor shape at the time and yet they expected me to
spend every day waiting in their big waiting rooms. I was in MN for two weeks
and
most of the time I was just kept waiting.
They redid every single test that my doctors had done in preparation for my
visit and were not interested in even looking at my records.
I think they have become just a big money making machine at the expense of
some very sick people.

Hi Jack,
Just wanted to thank you (belatedly) for the time you put into putting
together this newsletter for us!
Rachel

Is this legitimate? I always wonder when the seller's number is
given. . . . no name either? Just wondering.

Hi Shirley,
Welcome...
I take MTX combined with folic acid as well ~ and I have no trouble with mouth
sores (every once in awhile I feel like I might get a cold sore, but that is
usually the day after I take the medication ~ and I never get one).
Occassionaly I am prone to headaches (not bad ones, just sort of achy pressure
that goes away with asprin (tylenol, or something like that). I also can be
tired the day after, but not bad. All of the side effects are minor for me and
well worth the reduced swelling and pain!
The other drug I was taking (am now trying to back off of) ~ was Remicade. Was
a miracle drug for me with the only side effect being extreme tiredness the day
after (but you only take it every 8 weeks, so one day of extreme tiredness is
fine and beats EVERYDAY).
The one thing I will say strongly though is, Prednisone is not a drug you want
to be on long term unless there are no other options. It is very hard on your
body and the side effects are huge in comparison. Bloating, weight gain,
inability to heal/recover from minor cuts and scratches or sinus infections,
depression, other pain, etc... My ex was on it for years and it was terrible,
but he needed it to breath...

Greetings Carol,
I'm sorry to hear about the neck problem you are dealing with now, but
before I submitted to neck surgery, I would investigate prolotherapy. It
just might be your answer providing you can find a qualified practitioner.
You may remember back in 1997, I went to Mexico to be treated with this
therapy by Dr. Milne J Ongley - www.ongleyonline.com. I think he calls it
proliferant therapy. What amazed me was the number of doctors, dentists and
their families, along with nurses and rehab therapists that were there for
treatment. This man performed "miracles". I stayed in that office day
after day interviewing people and watching their progress along with my own.
I had a lot of damage from the rheumatoid arthritis - could barely turn my
head, shoulders seemed frozen giving me very limited use of my arms, very
little movement in hips prohibiting going up and down stairs, and foot
problems. Dr. Ongley was able to correct all of these problems - giving me
my life back.
There is a lot of info on the net about prolotherapy, but I don't have time
to research it for. You can find a practitioner at either of these sites.
In fact I noted on one of these sites a doctor in your city.
www.aaomed.org or www.getprolo.org.p
I note Dr. S. Todd Robinson in Lakeland offers prolotherapy. He is also
experienced with the AP - his father having trained under Dr. Brown.
http://www.dormanpub.com/index.htm - Dr. Dorman trained under Dr. Ongley.
You might want to read the book Prolo Your Pain Away by Dr. Ross Hauser in
Illinois. Dr. Hauser runs a sports clinic using prolotherapy and I
understand also offers the AP.
Ethel

Igenex is th othr lab that hs an antigen test. The one I was speaking of is
the Bowen QRIBb test for Lyme. info is at www.Bowen.org
In a message dated 8/25/2006 6:38:08 AM Eastern Standard Time,
janper@... writes:
Dr. Chiu,
You can go to igenex.com and find information there.
jan
Graham Chiu <compkarori+rheumatic@...
Hi Carol,
Do you have a URL that explains the testing?
We don't see Lyme in our country and I have recently seen a young woman with
an agressive arthritis who was bitten by a tick some 5 years ago shortly
before her disease started.

Hi Amy,
I've been more or less away from my computer for the past few days ~ so I am
just now making my way through all of these. I wanted to send you a note to let
you know we are all thinking of you and can share in your pain (literally and
figuratively)...
I wish I could offer more in the way of support ~ for your situation, but I am a
41 year old mother of a 15 year old daughter. I went 16 years without any sign
of PA after my initial flare 19 years ago ~ and then two years of just minor
stuff, so during my pregnancy and her early years, I was fine (well, as fine as
I'll ever be)!! I can only imagine how difficult your situation must be...
I wish you better days ahead!
Karen (idaho)

Hi Janet: thanks for the response. I don't think I have fibromyalgia,
although it hasn't been tested for either, so I could and not know it. I
dont have sleep apnia, and don't snore much except when I have a cold. I
know people with sleep apnia though. And the whole non REM sleep thing
didn't start until I started the meds
Crystal

Hello everyone,
I am taking the liberty of writing because my husband has been
diagnosed with Psoriatic Arthritis and suffers from chronic pain.
After trying the usual treatmens such as Arava, Metatrexate, etc with
devastating side effects, one of the doctors recommended he use
an "Intrathecal Drug Delivery System" to deliver morphine
(specifically he suggested the one from Medtronic).
From what I gather, this is an implantable pump that releases
programmed dosages of medicine thru a strategically implanted
catheter, and thus relives pain.
Now, all this sounds very promising, but before we do anything we
wanted to ask if any of you have used, tried or heard something
(either good or bad) about this sort of things.
We both thank you very much, and wish you all well.
Sincerly yours,
Coral Ruiz
[Editor's Note: Hi, Coral. Sorry to hear that your husband has been so badly
hit by PA. Before taking the drastic step of a morphine catheter, is your
husband under the care of a rheumatologist? Has he tried and failed on all of
the following drugs: Remicade, Enbrel, Humira? These drugs don't work for
everyone, but they have given many of our members "new lives", myself included.
Remicade is delivered by IV infusion every 6 weeks, while Enbrel and Humira are
delivered by self injection. They are miracles for some. Please read our
archives and you will see that many, many people have been helped enormously by
these drugs. I would discuss these options with your rheumatologist as they are
a lot less severe than a morphine catheter. Please stay in touch and let us
know how it's going. Kathy F.]

Hi everyone,
I just wanted to update you that I was able to start my Remicade,
yesterday as a matter of fact. I think this might be my miracle
drug. I was infused yesterday morning and by evening I felt the
improvement. This morning I was able to get out of bed with out
hanging on to the walls because of the pain in my feet. This
evening my dear husband made the comment that I seem to have a
bounce in my step! :) In two weeks I will be going in for my
second dose...can't wait to see if things improve even more.
Gentle hugs to all,
Ann

Hi!
I have been wondering if anyone has any gadgets or items that make living with
PA a little easier. I know the 'Good Grips' brand, I have a measuring cup and
spatula of theirs. I haven't found a jar opener that works for me (unless you
count my husband). I am sure there are things I have never thought of. For
example: after my son was born my husband bought me a massage chair, I love that
thing.
Also we are buying a condo and I would like to know what modifications would
anyone suggest. For example: all the door handles are levers (knobs are evil);
a bar in the bath tub; etc.
Does anyone have any recommendations? I would appreciate any/ all ideas.
Thank you!
d in Tokyo

Hi Ann...
Congratulations ~ for me it was exactly as you said ~ and I continued to improve
even during the time period between the first treatment and the next two weeks
later. After the second treatment, life was almost back to the way it had been
~ most of the inflamation was gone and some aches and pains here and there...
Glad to hear its working!
Karen (idaho)
annfromthehoosierstate <annordavid.leclere@...
Hi everyone,
I just wanted to update you that I was able to start my Remicade,
yesterday as a matter of fact. I think this might be my miracle
drug. I was infused yesterday morning and by evening I felt the
improvement. This morning I was able to get out of bed with out
hanging on to the walls because of the pain in my feet. This
evening my dear husband made the comment that I seem to have a
bounce in my step! :) In two weeks I will be going in for my
second dose...can't wait to see if things improve even more.
Gentle hugs to all,
Ann

Hi everyone and thank you to all who responded. I hope you don't mind
that I am not responding individually, but my fingers are not being
cooperative tonight. I took my son to the dr and he said the rash is
either poison oak or poison ivy. He gave him a steriod shot and
cream. I asked him if it is possible it is psoriasis related and he
just said if it comes back again off and on it could be. I have never
seen poison oak or poison ivy. So for now we will just watch how it
develops. This dr was more concerned about the migraines, which is
good but when the doctor said it would take about a week for his skin
to start to heal you could see the tears in his eyes. Please pray
that it is just poison oak and will clear with the creams.
Thank you so much for your kind words of support, its not so much
that I blame my self for giving this to him, but we all know how hard
life is without always having to explain "what the sstuff is all over
your skin."
Pat

The lady that led me to this group 8 yrs ago had sjogrens. She did the AP
about 15 yrs ago and is in remission. The answer is yes it does work. My DX
was systemic scleroderma, systemic lupus and polimyositis, mixed connective
tissue disease. I am in remission from all of that and started the AP 8 yrs
ago. Blessings to you and have a great holiday. Judy Duncan Florida

In a message dated 10/14/2004 8:23:31 PM Eastern Standard Time,
annordavid.leclere@... writes:
Hi everyone,
I just wanted to update you that I was able to start my Remicade,
yesterday as a matter of fact. I think this might be my miracle
drug.
Hi ann,
I just wanted to know if you have tried any other biologics before the
Remicade. I have been from single dose Enbrel to single and double dose to
Humira
and now waiting to try double Enbrel again. I don't know if Remicade would
make much difference to me.
Janet

Ann,
Great post ! Short and sweet but put a tear in my eye. I'm very
happy for you.......I remember the first time I felt the Enbrel
might possibly be my miracle drug...the feeling of finally having
hope is amazing ! I remember my husband saying the same thing to
me "thinking I had a bounce in my step". I've been feeling better
for 2 months now and I still have to pinch myself. Stay in touch
and enjoy your new lease on life...it's great to read the success
stories !!
Mary