Rheumatoid Arthritis

wow - I can't even think of going no meds - if I miss a dose - I start to feel it within hours and it takes me a couple of days to 'level' out by taking them on time. Hurting bad today - can hardly move :( On metho, prednisone, aleve, folic and ultracet as needed - use that for carpel tunnel pain.)
Helen

I

No Biologics and heck no on the Methotrexate...that stuff is poison!!!

Actually I am not on any meds right now. I was suppose to re-start my meds over a month ago. But just keep forgeting. Humira burning like acid is a good reason to forget! LOL

drs just for this reason ! a thought to concider .
john
take them responsibly. My Rheumy is not too keen on giving narcotics but
I have 2 doctors who will write me Rxs if needed.
I thought about this. I do know two doctors who may help me if I need
it. One is a self pay doc who doesn't take insurance and the other
is one my husband used to work for. So is that what you mean? You can
go to these other docs and they'll help you? Do you go thru insurance
then?
I freaked out again today because I misplaced the script, I spent two
hours looking for it. I knew just how bad that would look to call and
ask for another script :) Plus the whole group of docs is now making
patients sign a disclaimer for Pred and Vicodin. I probably wouldn't
have gotten another script. But whew, I found it :)
Thx for your input :)
Kelly

I've had really extreme hair loss for several years now,
probably since the time I started getting RA, although
I wasn't DXd till recently. I'm not on MTX, just Enbrel
now. Have any of you experienced this? Hair loss just
from the RA? And would Folic Acid help that?
Thx,
Kelly

Hi Toni....I had hives/rash when I was taing plaquinel. I was always able to take if then the rheumy put me bakc on it after about 6 yearsd and I developed a bad reaction to it. The hives started from head to toe. It took about 1 1/2 weeks to get rid of. My p/c put me on prednisone..upped the dosage, gave me a steropid shot of some sort and zyrtec. Is it itchy/ Mine was itchy...

Paula

Anyone else suffer from Hives? I have had hives ALL over for the past two days. I first thought it was started due to an allergy to a hair cream I had used. I am deathly allergic to sulfa and sulfites. But after 48 hrs of suffering I finally went to the doc today. 80 mg steroid injection and Clarinex pills I am feeling much better. He told me continue taking Benedryl as I feel is needed. I saw a nurse practitioner who was wonderful!!!

Still sore and a prickly feeling on the worst places...but much better. I called my rheummy and let him know. To see if he wanted to see me. I get hives right before a major flare. But he told me to see my PCP to get the Hives documented and see him if I had RA symptoms!! Wow lots of help!!! I am tired of this jerk and I can not wait until the new doc arrives in town.

Toni

lie on my back with legs straight out for more than minute.
Oh, I know, isn't that awful? Window shopping is beyond my ability
now :) Any my PTs don't seem to understand, but
it's because my herniation is sideways, hence the not being able to
lie on my stomach or back. Not that I really understand why, but that's
what the ortho doc said...
Kelly

I just had the most horrible experience with my rh. It turned out okay
but I was so scared I couldn't even write about it even though I wanted
all your advice.
My rh had prescribed 1 dose of 7.5/500 hydrocodone per day, but I got a
horrible ulcer that that was misdiagnosed and untreated for about a
month. I literally couldn't take a mouthful of food or even water
without pain meds on board. (I lost 15 pounds in a month.) So during
that time I was taking three doses a day. Then when the ulcer got better
I went down to 2 doses.
I told him (and his nurse) all about it 2 weeks ago and they just
nodded. So I assumed he was giving me the freedom to manage my pain,
just like with prednisone.
But when I went to refill the hydrocodone (way early, I'd gone thru 4
months worth in 2 months,) his nurse said that since I was "self
medicating," the doc would prescribe one more month at one dose a day
and then he would NEVER give me narcotics again. Plus they were sending
a letter to that effect.
I was so freaked out. I mean, I have another 40 years or so to deal with
this disease and knowing that the letter would follow me forever and
that I'd probably be denied pain meds because it would look like a was
an addict and a drug seeker scared me to death. I thought I'd have to
find a new rh and was terrified of that, too, because this one has been
so kind and nice and helped me so much.
Oh, and the nurse said to go to a pain management clinic, but I'm
already going to PT for a herniated disc and my cervical spine, but the
latter is getting worse.
So I figured I had to talk to him and I made an appt with him, only I
couldn't get in till July 27th. But luckily there was a cancellation
today. I was so afraid to go in and talk to him about it. He's a
specialist, how on earth could I "confront" someoone with so much power,
especially power over my quality of life?
But I knew we had to talk because I couldn't understand why he'd been
okay with it before and then just cut me off. I mean, if he would have
told me 2 weeks ago to stop doing it, that he didn't want me
"self-medicating", I would totally have done what he said.
I cried for at least half the appt and told him what I was feeling and
thinking and why and how I'd been taking the hydrocodone, and he was so
nice. Early in the appt he said, "I don't want this to be a battle,
either, we'll work through it." He explained why he'd done and felt what
he did, and it made sense.
In the end he believed me and upped my dose of hydrocodone to what I was
hoping for and ordered an MRI of my cervical spine, and we'll also be
going up on the lyrica, which is helping my finger pain a little and may
eventually help the cervical spine, too. Plus I'm gonna see if he can
refer me to PTs who know about RA.
So, I still have my trusted, kind rh and I still have pain meds. Of
course I've learned my "lesson," I will now be SO careful.
I know so many of you have it so much worse, you can't get pain meds at
all, and I'm so sorry. So thanks for listening to my story - if you've
made it this far :) - even though I know a lot of you are hurting and
have much worse stuff going on. I just needed to vent and let it out.
This group is a lifesaver :)
Take care,
Kelly

Hi all,
I have run into a major problem and need your input. I was on Enbrel
& Methotrexate for 1.5 years. I have been experiencing major hair
loss for a few months. My Rheumy said it can be the MTX and I should
double my folic acid. I did double it, but I also chose to go off
the MTX (with her consent) to make sure that it is what was causing
the hair loss. I did this because I am 54 and going through
menopause-which can also cause hair loss.
I have not had any MTX for 4 weeks, but I am still losing a lot of
hair. My Rheumy said it can take some time for the effects of MTX to
leave my system and that they even, for example, do not recommend
getting pregnant until you are off of MTX for 3 months.
I know my hair loss could be menopause, but it is not too likely.
Menopause causes male-pattern baldness (top of head/forehead line
etc.) but I am losing hair everywhere.
Anyone else experience this? Any pointers you can share?
Supplements?
If it was the MTX causing the hair loss, how long before yours
stopped?
Thanks for any and all help,
Karen

Vicki wrote: I work as a cashier at a grocery store.

Ardeith writes: I've watched the cashier's at our local grocery store, and I fail to understand why one couldn't use a stool to sit on while passing items over the scanner. The only time I see them have to move around is when they start bagging groceries before a bagger gets there to help. One cashier in our local store had a spider bite on her leg.....they said it was a brown recluse spider....and those bites cause big sores, hurt a lot, and take a long time to heal......and this woman was allowed to use a stool for months while the bite was healing. Her doctor had to write an order for her to be allowed to use the stool......maybe your store would be more flexible if your doctor "ordered" you to sit?

I'm assuming you've tried "pressure hose" to keep the swelling in your ankles down. Have you tried changing shoes three or four times during the day? Of course, you aren't wearing spike heels....but maybe going from very flat, like sandals, to a one inch heel.....changing off over the day would help? Last place I worked I had to do some walking, some sitting, then some walking again.....and every time I had to take a walk, I changed the heighth of my heels.....one time flat tennis shoes, the next the inch and a half pumps......and changing the angle of my foot did help a bit.....not greatly....but a bit.

Not being able to work an eight hour shift on my feet is one of the reasons I was declared disabled.......that and my clutzy fingers. I'm limited in how much my hands can pick up, and can't type fast enough for most job requirements. The Florida job service sent me to vocational rehabilitation to see if I could be trained to do something different.......I had done clerical type work, cashier, ....switchboard work....radio dispatch......so they were looking for something I could do sitting down that would pay what my last job had paid.....$8.00 an hour. But the final verdict was, "Hey, you're a genius, woman.....but you are also a total clutz when it comes to re-training you. You'd better apply for disability." So, I did....

I could still do radio dispatch work...that's a sitting job....but both the sheriff's office and the local cop-shop hire relatives first.....we're a small town here.....but I couldn't do anything that meant being on my feet more than a few minutes at a time....and my feet aren't the problem....my back's the problem. My doctor said x-rays of my spine reminded him of a dock post that was covered with barnacles....nice guy, my doc. Last time Pain Management tried to put an injection in there, they couldn't find a space between the "barnacles" to fit the needle through. And oh how much those shots helped!

After I was laid off my last job, I spent months searching for work. I began to think there were no jobs for a woman over fifty, a woman who was no longer an "office decoration," or a woman with any sort of medical problem. The company's insurance carriers don't want them hiring anyone with any problems at all. Even the local schools didn't have a place for me after I finished college at 48, and had my teacher's certification. The only people hired from my class were under thirty. I guess I can understand that.....younger people aren't likely to have medical problems, and I'd had RA for 18 years by then. I'd thought that if my body couldn't do the work to support me financially, I'd educate my brain and use brain-power to support me.... but I hadn't counted on the reluctance of employers to hire anyone with physical problems.

"Hire the Handicapped!" Yeah, right. If you are a military vet, that might work for you. But it didn't help me a bit. So, now, I'm 63, overweight by forty pounds, still handicapped, still clutzy.....but I can still create beautiful things with my cross stitch and embroidery and crochet work.....it just takes me a long time to finish anything.

Ardy

Does anyone have metatarsalgia (ball of foot pain)? If so, have you
had the osteotomy surgery? I have read in several articles that foot
problems start showing up in some rheumatoid patients after 10 years
of having the disease.

Hi,

I have very swollen ankles and sore feet, particularly my right one which I sprained severely two years ago. I work as a cashier and I am on my feet constantly. Any suggestions on how to control the swelling and pain? SHould I wrap my bad ankle?

I see my dr in a couple of weeks but thought someone here might have some suggestions. I know I lost some of the connective tissue in my arch area because my foot "collapsed" about a year ago. It felt like it went flat. and my old dr said that is probably what happened.

Thanks,

Vicki

--- USFamily.Net - $8.25/mo! -- Highspeed - $19.99/mo! ---

"Life should Not be a journey to the grave with the intention of arriving safely
in an attractive and well-preserved body, but rather to skid in sideways,
champagne in one hand, strawberries in the other, body thoroughly used up,
totally worn out and screaming as loud as possible "WOOHOO~~ What A Ride"!!!"
That's my story and I'm sticking to it (at least for today).
Ila in Maine mailto:sewcraftyila@...
"Life's a journey, not a destination"
Steven Tyler (Aerosmith)

I absolutely LOVE pilates!! Its so good to stretch and increase your range of motion. I use a balance ball (be careful on this, you need a good rubberized mat underneath and ALWAYS wear sturdy shoes). I learned Pilates from 2 different videos. I alter the exercises a bit in areas where I am limited, but I feel so GOOD after exercising! I walk on the treadmilly, do exercise bike, and then finish with pilates and light weights.

There's also something on satellite tv called Caribbean workout, and its also Pilates.

Maria, age 45, adult onset RA

When I was on prescription Ibuprofen, it was 800 mg (4 reg pills)
3 times a day...
Kelly

As of
I'm pretty sure that the rest of the group would concur when I say,
think about DMARDS! Otherwise, the RA will just continue to damage
your joints. I know it's scary, but so many on this list have been
helped by these drugs, I hope you'll consider them...
Good luck :)
Kelly

Hi LCS,
I write for a living, too, altho I haven't been able to do much since I
got RA 5 or 6 months ago. It's fairly distressing. Especially because
I don't even have the will to get things done, like queries and ideas
and suck, and that doesn't even count the finger pain.
I did get Dragon Naturally Speaking which helps greatly with rough
drafts. It's not so hot with editing, although maybe it will be once
I train it better.
I, too, was told about Glucosomine by my regular doc and it didn't do
a thing.
Yes, for me, "better living thru chemistry" is a mantra :) I really
hate taking all these drugs (12 or so at last count) but it's better
than becoming more and more disfigured and in pain...
Good luck,
Kelly

Speaking of sleep (and the problems I have with it), I'm thinking that I
may have Fibro, too. Sleep trouble, severe muscle pain in my back that's
not lessening with therapy, headaches, dizziness, etc. Do any of you
have any advice as to a dx?
Thx,
Kelly

My hands hurt *much* more after I do things like typing or gardening or
dishes, so yes, not doing anything with them does usually lessen the
pain. Unless you're in
a bad flare, then they just hurt in general :)
Kelly

you can hope anyway .
differant or something you
haven't in a long while maybe it will bring a smile to your face .
Thx, John :)
Yeah, I always try to hope. I have a couple of things that make me smile
that I try to do on a daily basis, "try" being the operative word :)
Hope you're doing well...
Kelly

Hi all,
I'm not even certain I'm in the right place since I only believe I
have rheumatoid arthritis - have not heard my doc say so, yet.
I'm 57, I write for a living, and typing has become painful.
The problem was manifesting on occasion, but last December I did some
strenuous hand activity for two solid days that seems to have made the
pain permanent. It keeps me up at night.
A few months ago when I asked my doc about it, he said to try
Glucosamine Condroitin for a month or two and if it didn't help he'd
put me on an anti-inflammatory.
My local health-food store/vitamin shop advised me to add TSM to the
Glucosamine.
It hasn't really worked, and the pain actually wakes me up at night.
How much Ibuprofen can one take in a day - I take 3-4 in the morning
just to be able to work, and 3 as needed with meals laters.
So, should I go for the AMA "better living through chemistry" approach?
thanks, LCS

Does anyone ever feel that weight loss or starting an exercise
program is impossible with RA? I am so frustrated about it.
Normally my adult weight has fluctuated between 145-160lbs after
having my two kiddo's. Not that I was normally a skinny minny but it
was a weight for my 5'6" frame that I was comfortable with and
didn't beat myself up about too often. This month I have now been
diagnosed for 2yr with RA and my weight is at an all time high of
185lbs. This weight is NOT ok with me, and not only do I beat myself
up daily about it, I do it all day long. It disgusts me because I no
longer "look" like me and am very disappointed that I've let it go
this far.
What's worse is that every time I try to start a "diet" along with
exercise, my RA kicks in and sabatoges me. I either have a flare or
the pain just increases to where I have to stop, or let myself stop.
Diet alone is not good enough for the changes my body needs. It
needs excercise. Simply things like riding my bike seem twice as
hard as just two years ago prediagnosis. I'm letting myself, and my
muscle deteriorate which I know is not good. I can usually kick off
20lbs thru diet changes but I really need excercise to to increase
that and get some muscle tone back.
So, long story to my question, what excercises/programs do you all
do?

Embrel?
I used to cry alot before I started Enbrel. Now I still get depressed
and cry sometimes but not quite as often...
Kelly

I've worried about permanent joint damage, too. Even tho mine doesn't
show up on xrays, I *know* they're damaged because they hurt. And I
agree, another couple of months and I'd have been bed ridden, although
I was halfway there already. It's so frustrating to me that it was so
hard to get a dx, and others on this list have had it so much harder
than I.
I'm shopping for a new PCP, tho, because she's been dismissing me for
years now. I think she thought I was a hypochondriac because I was
always sick and she couldn't find anything actually *wrong* with me.
Then when it turned out I had RA, she didn't say a word about it. I
figure I need someone who knows about our unique troubles. I'm tired of
dealing with someone who doesn't have a clue about our meds and needs.
I know a lot of you have been thru much worse...
Hope your RA is relatively under control now :)
Kelly

I'm not usually depressed......I've always got a book to escape into, or a project to work on while I listen to a book tape, or something on TV.......but I've noticed I feel a bit elevated when I take my Embrel on schedule. I've been self-injecting twice a week, and I really hate needles, and sometimes forget that second dose......but if I keep to the schedule, I feel more optimistic and more willing to talk to people and be sociable.

I wonder if other people have noticed a lighter side to their moods while on Embrel?
I asked my doctor if other folks had mentioned that, and he said not.......but maybe he just doesn't know or remember.

And, you know, he calls me Ms. Carter instead of Ardeith, after I called him David, instead of Doctor......funny how that works......
Ardy

also a suppement called milk thistle . . . . you can buy it at any of
the vitamin shops. i get mine at great earth (mainly because i get
most of my vitamins there and it's convenient and i know their stuff
is good quality).
bon/boys

I used milk thistle to help my liver after enzymes shot up due to methotrexate. The docs were astonsihed at how quickly my liver enzymes got okay after using milk thistle a couple of weeks.....good stuff...really helped me out.

Kay in La.

Got a call from the rheumy yesterday. My liver enzymes were 4 times
higher than they should be, so I'm off Arava after only 3 weeks. I've
been feeling so well lately, but that's probably not due to the Arava
as I was told it takes at least 4 weeks to help.
I was resting when the doctor called and then I was in a bit of shock
about the news so I forgot to ask the doctor some questions. Maybe
you can help. Will stoppping the med be enough to restore my liver to
health? Is there anything I can do with diet to support liver
detoxification and healing? Any foods I should avoid? (I'm thinking
fats are a no-no and lots of lemonade would be a good idea.)
I have an appointment with a naturopath in two weeks. Seems like
great timing.
Once again, I questioned my doctor's quality of care. When she
called, she thought I was on methotrexate! She makes so many mistakes
because she's TOO RUSHED all the time. But I've seen two other
rheumys and she's better than they were. There's a shortage of
rheumys in my area and they're all overworked. I know this is
irrational, but I feel a bit distrustful again because she gave me
something that harmed me. I knew the risks, but I still have this
feeling of "I trusted you and look what happened!"
Any thoughts?
Sierra

Nice to see you back here, Gwen! I always enjoy your posts.
Sierra

Dear Gwen,
didn't know for 4 years and I didn't suffer from any sort of depression. But
after I knew, I started to have depression.
I didn't think you were talking about stopping or not taking medication.
I too think I had RA for many years before it finally manifested in my
fingers so that it could be identified. I had extreme fatigue,
infections, pain, etc, for ten
years, then about a year and a half ago I got very clinically depressed.
Before that my depression/moods were "normal." But the depression hit
hard - I kept saying "my life sucks", but I didn't really understand why
I was feeling that way - and then the actual RA symptoms hit hard a
little bit later.
Personally I think the depression is part circumstantial/psychological
and partly part of the disease itself.
My 2 cents...
Kelly

Kelly..Bonnie....

I lived in Aurora Colorado for 3 months. hee hee My ex husband worked at the Fitzsimmons Hospital there installing an xray machine. We planned on living there but the company lost the contract while we were there. But I was glad cause my family all live in Ohio and my dad was up in years so wanted to come home. No place like home. But Aurora and Denver are beautiful...it was fun while we were there but i was homesick.

TomCruise...what goes around...

Paula

feeling so alone. It really helps to know that I am not.
Although sometimes I get depressed reading this list because we're
all suffering :)
Take care, hope things are better now...
Kelly

Funny, I was just thinking of that! I have one for epilepsy but was
thinking I should get one with RA info on it. Of course, I'm on, count
'em, 12 meds, so I don't think they'll all fit :)
Where did you order yours?
Kelly

I would never wish RA on ANYBODY, but I sure think you have to walk a
mile in someone's shoes (or uterus for that matter :)) before you go
criticizing them...
Kelly

Well you do what I do, I just got a cd by a group from the states called
My kids tell me I'm not allowed to watch the news :) Or Disney movies,
or country songs, or anything with a happy or sad ending :) I choke up
all the time. March of the Penguins just about killed me (I won't say
why just in case some of you are going to see it) but if you tear up a
lot, DON'T see it :)
Kelly

I realize that many of you have seen this website before, however, I thought it would be interesting to our new members....gentle hugs! Marcia
Note: forwarded message attached.

Hi again,
it is isnteresting to hear people talking about how they used to
resist taking meds.
Since I got the disease at 14 that just doesn't apply. I can barely
remember what it was like to get up in the morning and not take meds.
I do remember what it was like to take meds that didn't work for me
and I thank G-d every day that researchers are still investigating
this disease and finding better meds.
I have had weird side effects from various drugs-- when I was a
teenager I had injectable gold salts and they caused me to lose the
upper register of my voice, they also gave me gastric distress.
Nobody really believed me but when I went off of them many years
later, I was a soprano again and no more bloating.
I'm so grateful they treat the disease aggressively now. They used to
take the position of giving as few drugs as possible, but the problem
with that is that it's the inflammation that cuases the deformities.
Also, chronic pain is damaging psychologically as well as physically.
Anyway just thought I'd throw in my perspective for those who feel
leery of drugs.
We all have an auto-immune disease. Our bodies are attacking
themselves. We don't know why. But it's a holistic, systemic illness
(unlike osteoarthritis which hits specific joints alone).
So you should not feel weak or dependant if you seekd rugs to help
with aspects of the disease.
Of course they don't know why half of them work. I still don't know
why I got hives from Remicade but had a good result on enbrel.
Here's hoping they eventually come up with a cure/prevention.
If they'd had enbrel when I was growing up, I'd be playing in a
symphony orchestra now! (I was in state youth symphonies).
Onwards...

Maria...

Thank you for the insider's look at Tom Cruise. I heard that he was a difficult person. Very controlling and all. Now I believe it after seeing all his antics. I feel sorry for the new wife. She's so young. I hope that he doesn't control her though seems to late for that. Katie's family is from Ohio where I live and there has been much made about how mcuh they disagree with this union.

Paula

I have had chronic pain for 17 yrs in the form of migraines. The pain
affected my moods as well as the rest of my body. They put me on
Prozac, Zoloft Paxil, and I started swelling. They assumed it was an
allergy, so just switched me to another drug. They gave me Effexor and
Elavil and my joints went crazy and got huge. After 6 DRs, they
finally diagnosed me with RA. I now take NO antidepressants at all, as
they seemed to make my flares worse. I am now on Humira, but I need to
know how long is a reasonable amount of time for the drug to actually
work, or have it be "failed" and move on to another drug? Any input
would be greatly helpful!!!
Thanks!
Diana in Colorado
Any other Coloradoans out there?????

I just wanted to let everyone know that I have not dropped off of the face of the planet.

First, I moved out of my parents home at the end of March and I've just been very busy. I started school April 3 (I'm going to Indiana Business College) and am majoring in Criminal Justice. My studies have been keeping me pretty busy.

And my Dad passed away less than a month ago. He died from renal failure. If my Dad had lived past May the 14th my parents would have celebrated their 57th anniversary. My dad died peacefully and the way he wanted. And I miss him terribly and I felt a need to have my space.

But that's kind of been what's been going on.

Take care and I love you all.

Susie

Oh, lord, me too :) Actually I used to do that anyway, but it's much
worse now...

I just ordered a medic alert account with all of my info so that if I'm in an accident they can access my info quickly. I was reading in an RA brochure from the Arthritis Foundation that if you take prednisone, it's a good idea to wear an alert bracelet or something.

I started thinking about all of my ailments and meds and such and decided it was a good idea. I'm getting a pendant and wallet card. The hospital or medics can call a 24 hour number and get all of my medical info and contacts quickly.

Do many of you have medic alert jewelry?

Darlene

Deb wrote, "Take Glucosamine and Chondritin to keep your joints strong if you arent already....."
hey, Deb! I thought these two supplements were for osteo, not rheumatoid. ??? gentle hugs, Marcia

Sorry I have not been posting much lately. Things have been very, very busy around here. As the school year came to a close came that very special time of the year.

I am pleased to announce my Daughter Elizabeth Graduated from High School on Saturday, May 27th with 310 of her classmates. It was a beautiful and moving ceramony!

It has been a wonderful, super busy and exhausting weekend! Elizabeth will be leaving for University mid June to begin her college career.

We are so proud of her!!

Toni

Hi Susan...

Yes, gosh forbid Katie gets depressed or a little down in the dumps. The way Tom went off on Matt Lauer...what a idiot.

Well, good luck with TomKat. Why does the media give these celebrity couples these names? Brangelina...Bennifer...ugh...plain weird. I really dislike when they do that.

Paula

You're right Deborah...$ can't buy good health that's for sure. It may make you more comfortable but can't make you healthy. He's still a human just like the rest of us. Down the road, he will need a medication for something.

Hugs.....Paula

Well, you're right John, after seeing him jump on Oprah's couch, I thought for sure he was headed for the planet Voltaren.

Maybe one day he will need a medication for an illness where Scientology can't help by itself. Where medication will give him his only sense of health..or relief of pain.

Paula

And here's one from John Hopkins linking chronic pain and depression:
http://www.hopkins-arthritis.som.jhmi.edu/mngmnt/depression.html
(this article also discusses the analgesic affects of antidepressants.
OK, I'll stop now, but I did want to point out that what you are
feeling is as PHYSICAL as psychological and can be treated medically
as well as by talking and dealing with it!)
A biological vulnerability to affective disorder in patients with
chronic pain is also supported by studies of biological markers.
Decreased REM latency, decreased serum melatonin and lower density of
3H-imipramine binding sites on platelets have been found in patients
with chronic pain (Blumer et al. 1982; Magni et al. 1987; von Knorring
and Ekselius 1994; von Knorring et al. 1983).
Depression is not simply a comorbid condition but interacts with
chronic pain to increase morbidity and mortality. Depressed chronic
pain patients report greater pain intensity, less life control, and
more use of passiveavoidant coping strategies. They also describe
greater interference from pain and exhibit more pain behaviors than
chronic pain patients without depression (Haythornthwaite et al 1991;
Herr et al. 1993; Weickgenant 1993). The presence of preoperative
depression in patients undergoing lumbar discectomy was predictive of
poorer surgical outcome at 1 year followup (Junge et al. 1995). In
patients with rheumatoid arthritis, depressive symptoms were
significantly associated with negative health and functional outcomes
as well as increased health services utilization (Katz and Yelin 1993).

Here's a pertinent excerpt from the article. The point is that
depression is clearly not just a result of your sadness over the
disease. The disease itself is altering your mood, and the depression
is a symptom of it. The study shows that inflammation itself causes
depression, which explains why you find yourself crying over nothing
as your joints swell up. Because it's also logical to feel sad when
you're in pain it took a long time for people to study this; it's so
much easier to just dismiss it. But depression isn't just being sad
of course, it's the low energy, bleak, low feeling which is NOT the
same as just being sad. For me, my speech would slow down too. It
was definitely a big big change. That it happened when I was a
teenager made it very easy for doctors to dismiss as just my teenage
angst. But they were wrong. I'm normally pretty upbeat, speak fast,
think fast. I may get down, but the sluggish habits of mood I fell
into when I was in my teens had everything to do with RA. Not a
coincidence that that was when it was most active. Anyway:
***
The surprise results did fit in with some other vague hints that
depression and inflammation are entwined. Depressed people tend to
have slightly raised temperatures, which suggests that they are
suffering from some chronic inflammation. They are also three times as
likely to die of heart disease--often caused by arteriosclerosis,
itself an inflammatory condition of the linings of arteries.
Still, Maes's results languished in obscurity, being contradicted by
other studies almost as often as they were confirmed--until, that is,
Dantzer decided to take a second look at some old rat studies he had
done in the late 1980s.
When you inject rats with parts of bacterial cell walls called
lipopolysaccharides, their temperatures rise, their sleep patterns
change, they become less sociable and stop eating. And it isn't the
bits of bacteria that trigger this so-called "sickness behaviour", but
the immune response to those bits. An injection of the cytokine
interleukin-1 (IL-1), which marauding macrophages produce when they
meet bacteria, makes the animals behave in exactly the same way. In
other words, the rat studies showed that inflammatory cytokines
directly influence behaviour

Here's an interesting link describing connection of overactive immune
system to RA:
http://www.biopsychiatry.com/immunesystem/index.html
But the point is, whether it's the chronic pain that changes the brain
chemistry to cause depression, or whether the hassles make you
depressed, RA is a SYSTEMIC disease. it does NOT just attack the
joints. It also affects your energy, sleep, everything.
My point is you can save yourself a lot of time if you suddenly find,
for example, 70s ballads make you cry for hours, by going to the RD
and demanding something for your mental state rather than getting into
an overanalyzed situation in which you seek specific causes for your
depression because there probably are none.
During my first really bad flare away from home, when I was 20, I was
in Italy. That doctor was the first one to treat me "holistically,"
probably because I burst into tears in his office. He said I should
enjoy my time in Italy. Not only did he begin giving me steroids,
which I'd never had before under the theory that it would "stunt my
growth" (you know, I'd happily have sacrificed an inch to be less
miserable as a teen)-- it was incredible, I had been limping, now I
could go down stairs-- he also prescribed B-12 shots and L-tryptophan.
After two weeks, when I got on the bus in the morning (I was on an
ancient cities program and we were constantly going to see ruins), I
found myself chatering a lot and full of energy.
that's when I realized that for two weeks, what he'd been giving me
had been just barely enough to make me functional.
These things are ALL CONNECTED. When my energy and mood were higher,
I found myself better able to cope with pain too (the disease was so
active then I still had plenty).
Oh and for those thinking "if it's this bad now, how will it be in 30
years"-- it might be MUCH BETTER. That's certainly the case for me.

I agree. I didn't like Tom Cruise before and now can't stand him. I would never go to a movie he makes and I hope his comments make his fans jump ship.

He needs to keep his mouth shut about anything concerning women or any chronic disease...or actually anything that he knows NOTHING about. I feel sorry for his new wife.

Paula
Canton Ohio

Hello
I know, I'm 44 and feel the same way. And I worry now about actually
*being* in my 80's or 90's. Here I'd planned on being this sprightly,
independant old lady with lots of energy. Ha! If it's this bad now,
how bad will it be in 40 years?
Sorry, don't mean to be depressing :)
Kelly

I'm going thru the grieving process, too but I think it's important
to feel your feelings and realize that it *is* a process. Eventually
we'll come to the "acceptance" part of it all :)
Good luck,
Kelly

this is the pain I get when I walk about ten min.s
Ouch, I know! Or stand. I hate window shopping and such cuz it hurts.
I used to use a home traction machine which helped but now I get
physical therapy and it helps. I still can't walk much but the sharp
pain is gone.
I've had it allso quite often but thought it was something esle maybe a
guy thing , so think you again .
I know, I was worried it was lymph nodes or something...
Hope you can get some relief :)
Kelly

Hi Miriam,
I'm sorry to hear your RA is so bad :( I agree, maybe your rh
could start trying some other meds?
I get the same feelings of "there has to be more to life than
this" altho my dx is fairly recent so I haven't figured out
exactly what that is yet :)
I spend a fair amount of time in bed now, and my kids (and their
friends!) are now used to coming in and talking to me and maybe
watching TV (I got a small TV with a DVD player for just that
purpose.) Much as I hate this disease, I do think it forced me
to stop moving and working so much so now, in theory, I spend
more time with them which is good.
And I agree with Ardy about getting the kids to be more responsible.
Mine are 14 and 15 now, tho, and they're just learning, so it's hard.
I never expected all that much out of them when they were younger and
they balk (and moan and complain) at the fact that they are responsible
for keeping the kitchen and living room clean. But they're getting
there.
I do hope you can get some relief soon...
Kelly

Hi y'all,
happy to say the hives are gone. Thanks for the aveeno tips. I'm
still on large doses of antihistamines, but down to 20 mg of pred.
Anyway, re RA and depression, allow me to offer some thoughts-- I'm 41
and have had it for 27 years (yup, since age 14).
One thing to keep in mind, and it's very important, is that depression
is a real, chemical side-effect of the disease, in addition to
whatever sadness you may feel because you happen to be in pain. I
sooooo wish I had known this when I was a teen and busily analyzing
why I felt so sad and sluggish, because being analytical I could come
up with reasons, but the REAL reason I would cry at the least little
thing wasn't "I'm in pain" but "my brain chemistry has been altered."
Sometimes a short course of paxil can snap you out of it and in the
long run that's MUCH better.
Also remember to focus on what you CAN do not on what you've lost.
Bad as we have it, there are people who are worse off, amputees and
cancer victims etc., and with RA at least there's always the hope of
full remission...

Haha :)
Kelly

Hello, my name is Melinda Morgan. I am a Psychology Master's student at Carleton University in Ottawa, Ontario, Canada. I am doing an online study of how individuals with Rheumatoid Arthritis adjust and cope with their condition for my Master's degree research. Below you will find details about the study and how you can participate!

Thanks,

Melinda Morgan

I filled out the questionnaire because of a post on another board I follow and I recommend it to anyone. It does take a while but it might help others learn more about RA. God bless.

Hi,
I am new. I have been trolling through medication info sites such as
www.medonline.org.uk (non commercial) where there are more than 70
treatments listed with links to further information.
Its all a bit much to take in as a starter. Is there a site with a
good summary of what is good/bad ?
thanks,
Frank

Hi I'm new to the group but not RA I live in Indiana and the past 2
wks have been bad - rain my meds are sulfasalazine750mg daily and just
started back on the lovely prednisone 15mg . Its just great to chat
with people that have been there and done that.... Janet

Hello group
My name is Phil and I live in the uk, I'm 47 amd divorced with no kids
or pets.
I developed rheumatoid arthritis 4 years ago and I find it very
painful in the cold weather which were having here in the uk quite
often at the moment so I'm really looking forward to the summer coming.
I'm looking forward to making new friends here and getting to know you
all
Thanks
Phil

wanted to say hi. I was diagnosed with Rheumatoid arthritus a little
over a year ago. I am a few short years from 50 but still have the
mind of a 30 yr. old, which makes it even more difficult.
I just keep going through this grieving process for the loss of what I
use to be able to do. Each day seems to bring about more changes. I
am on meds for the RA and seeing a rheumatologist, but this doesn't
help with the psychological aspect of it all.
How do you all keep your spirits up? especially on the bad days?

Which I do appreciate, because since I am a nurse, i see alot of
people get addicted to pain medications.
Have any of you had to switch MD's because of not adequate pain control?
Thanks for your feedback, and hope all is pain or nearly pain free.....
My rh says that only people who don't have "real" pain (meaning those
who use narcotics for "fun") have a problem with pain meds. He says if
you have real pain, you don't become habituated, although you may become
dependant.
I would definitely try to switch docs if I wasn't getting pain
management. I know a lot of docs are reluctant to give us pain meds
but I so appreciate my rh because he believes me and is willing
to try to helpn alleviate my suffering...
Kelly

the differance between pain from my
hips and my SI joints ? I have sever pain in my hips I think or thought
but every time I complain to my rhumy and show
him where he tells me no thats my SI joints and thats a bad place for RA
or rather one of the places it hits
hard frist , But theres never anything he can do for it and since i
cannt tell the differance I wonder if you or
any can give me a pointer on it
Sorry, I meant to respond to this earlier but got behind on posts...
For a long time I had pain in one of my SI joints, which are those knobs
to the left and right of the lower spine. After many years of
misdiagnosis, it turned out that it came from a couple of herniated
disks, tho, it didn't have anything to do with the SI joints themselves.
Only an MRI was able to show that.
The RA pain in my hips, however, is completely different. It's basically
in my groin on both sides. I thought hip pain would be on the sides of
my body, but my rh told me that what I'm experiencing is definately RA
related, as a matter of fact, when he does his joint tests, he lays me
back on the table and presses down kind of "into" each side of my groin.
Dunno if that helps, but I hope so :)
Kelly

Hilarious about the planet Voltaren. Keep up your good sense of humor. I was on the Voltaren planet once but it did nothing for me.

Paula

others do with their time. What activites do you guys do, for those with
more
Ardeith writes: Miriam, I was diagnosed when I was about thirty.....and I'm
now 63 years old. Your life is not over, by a long shot. I kept a garden
and houseplants for years.....worked at a potting bench sitting on a stool,
and pulled weeds sitting on a milk crate.......but my hip won't let me do
that anymore....
Last year I gave away the last of the orchids and houseplants and gave up
on gardening. If I had flower beds built up chair-high I could still have
pansies and marigolds.....but I don't.......and I can't do the ground-level
stuff anymore.
But I've always done things with my hands.....sewing, sculpting, crochet
work, painting......and even though my hands are swollen in some joints,
locked in others, my meds keep my hands pain free most of the time (my back
and hips are another story)
One trick I learned early on is that paintbrushes, clay tools, and crochet
hooks have to be big and fat or my hands cramp up and ache. So I use
masking tape to make a big lump I can hold without cramps. It gets paint on
it, or clay, and water when I'm working clay....but so what? It's just
masking tape and if it gets too messy I get my Fred to cut it all off and
make another lump.
Oh, yeah...almost forgot.....paint in little bottles can be a trial to
open......there's pliers and a jar opener in my craft drawer.....and a death
threat aimed at anyone who removes them! I keep pliers in my kitchen tool
drawer too.....and knives everywhere! One on my desk, one on my worktable,
one in my purse.....I hate bubble packaging that I can't open! So I
treasure my knives......
I do have to mark the lump with the size of my crochet hooks since the lump
covers the part that has the size on it. I can't knit anymore because
knitting needles are too skinny, and you can't make a masking tape lump on
them and still use them. I love to sew and do embroidery work, but little
needles cause cramps eventually, so I switch to crochet work for awhile.
I also draw.....and again I use the fattest pencils and pens I can
find....or wrap them in tape.......and anyone can draw......don't say you
can't draw a straight line...... most drawing is curved lines! ; ) And
there are some lovely color-books available that I've used just for
fun......and kids are not allowed to get hold of my big box of crayons,
either.
Speaking of kids......if you want to make some happier memories for
them....try taking them to the pool this summer. You'll find floating in
water feels wonderful, and it's something you can do with your kids. Or
the beach, if you live close enough to the coast. Developing something
crafty or otherwise creative that you can share with your kids might make
good memories, too. My son is the only one of my children who can remember
me chasing him in our back yard.......but his younger sisters remember lying
in the grass with me and watching ants carry bread crumbs away......and
going swimming......and finger-painting......and water-colors.... and
crayons.
I like to go to museums and such with my grand-children.....but I have to
use a wheelchair, or mart-cart, to get around them..........You didn't say
how old your children are......but if they are big enough to reach the
kitchen sink, they are big enough to help you.......and don't beat yourself
up and feel guilty over it! Anything you can do to help your kids learn how
to take care of themselves is a good thing.
My son told his sixth grade class he had fixed spaghetti the night
before.....when one boy said cooking was woman's work, my son informed him
that he'd never wait around for a woman to cook for him. He's an excellent
cook, by the way. And a computer program designer, too. My kids
learned to wash their own clothes, and run the dryer too. At about 12 or 13
years old. And if they didn't have something clean to wear for
school......they learned to keep their laundry done up and off their bedroom
floors. I quit cleaning their rooms for them at about that same
time.....so it's a mess.....I just closed the door so I didn't have to look
at it.
Maybe I was helped by having a mother who also had RA....and my sister and I
did most of the household cleaning from about 12 or 13 years old......our
father did what he called the "heavy" stuff, like mopping and waxing our
hardwood floors.
And feed your brain! If you can get to a community college or university,
take some courses in things that interest you. Most university buildings
are equipped to deal with people who have handicaps today.......and if you
can't afford to pay for courses, look into just auditting some.....no credit
without paying tuition, but you need to feed your brain. There are some
interesting courses you can take on the Internet too......without leaving
home.
Good luck.......
Ardy

Hello! After two pretty good years on methotrexate, my rheumy has
switched me to Arava. She thought my increased fatigue may have been
related to the MTX, and I think she was right! I definitely have more
energy since stopping it. I've only been on the Arava two weeks, and
I read that it takes 4-6 (rheumy told me possibly up to 12)
weeks for it to take effect. My question: Why do I feel so good?!
I finished a Prednisone burst last Sunday--could that be why? Does it
have a lingering effect? I was worried that once I finished it the
inflammation would come back because it was too soon for the Arava to
be helping. But, no inflammation at all! And this energy is a
precious gift...
The only pain med I need to take right now is OTC Tylenol Arthritis.
(I had been taking Celebrex for the past several years, but the
rheumy said I wouldn't need it during the Prednisone burst, so I
stopped and never restarted.)
Any thoughts?
Sierra

I have a question on meds. I was recently put on 10mg of prednisone (up
from 5mg) and started Humira, I get my second shot Saturday. My dr.
said that once I got on the Humira to start to taper back off the pred,
which I'm now back down to 5mg a day right now. My question is I will
now be on Mobic and Humira, and she was hoping to get me off the pred
all together within the next two months. Do you think this will be
enough, without a dmard? I've read that most times Humira is used in
conjunction with a dmard?
I was on plaquenil about 18mo which worked wonderfully for me but
suffered from terrible rashes on my face, along with itching. We then
tried mtx, only took two doses and again had a rash reaction. So I had
stopped my meds all together for a variety of reasons and this is our
first attempt at getting me back into control. What do you think?

My name is Miriam and I have severe RA that just keeps getting
worse. I am 40 years old and at times, I feel like my life is
over. I sit home all day every day and alternate between laying in
bed watching TV and sitting in the living room watching TV. I
generally have Dr. appointments 2-3 days a week and go for aquatic
therapy 3x a week. Other than this, I don't leave my house!
My husband is also home full time and takes care of everything. He
asked me to send a note to the list and ask what others do with
their time. What activites do you guys do, for those with more
severe RA whose joints are swollen and deteriorated, who have had
surgeries, who has constant swelling despite medications, chronic
pain etc.
I have 6 children and I hate them seeing me like this. Thanksfully,
they aren't so young anymore that they can do a lot for themselves
and they can do things to help me as well.
There has to be more to life than this. What else can I try to do?
What do you guys do?
My current meds, just so you have some idea!
Abatacept/Orencia, Methotrexate (injectable), Lodine XL for
inflamation, Neurontin, Topomax, Avinza (A morpphine based
narcotic), Actiq (Oral Fentanyl sucker for breakthrough pain),
Skelaxin, and I can't even think of what else right now. I do also
take meds for the depression though.
Please Help,
Miriam

Hey guys,

I am having some thoughts I need to share...or as my family says, ramblings.......

Just wanted to ask a quick question about what you take for pain. My Rheumy has me on Ibuprofen 800mg three times daily around the clock. And, Tylenol #3 for breakthrough pain three times a day as needed. I weaned myself down to ibuprofen just as needed, but my Rheumy said do not do this, stay on the ibuprofen constantly. Does your docs have you do the ibuprofen thing? I am concerned about long term liver damage and stomach ulcers from ibuprofen and don't want to be on it forever, but again, i am afraid of having the pain come back. I take the Tylenol #3's sparingly, but am also concerned that in the near future, these will not work for my breakthrough pain.

Another thing I am concerned about is that my Rheumy is very conservative when it comes to pain medicine. Which I do appreciate, because since I am a nurse, i see alot of people get addicted to pain medications. Have any of you had to switch MD's because of not adequate pain control?

Thanks for your feedback, and hope all is pain or nearly pain free.....

Melissa in WVa [INLINE]

I have heard that Aveeno soap works well also and very soothing. You can buy at the drugstore.

I hope you can get this taken care of and you don't have to suffer too much with it. It's miserable.

I was diagnosed with r/a in 1983 and last year was the first time I had any allergic reaction.

Take care...feel better...
Paula

Hi Gwen...I had an allergic reaction to plaquinel r/a med last year. I developed a rash from head to toe. It took about 2 weeks to show up but when it did, it traveled from stomach up and down. My p/c gave me a shot and upped my prednisone. Gave me Zyrtec and then benadryl later for itching (But the itching still cam about). It took about a week or more to go away. It was horrible. My rheumy said it was the plaquinel. I'm on arava now and I'm fine.

I also developed an allergic reaction to Humira. I had taken it years before with no problem but last year was different. It caused a red , purple, itchy area where I injected and then caused a decubitus ulcer. The area burnt like when you inject it the whole time.

If you're wondering about patients and their reactions to diff meds, go to www.askapatient.com I am not sure they have remicade sides yet since it is pretty new but you can try. I find it really helpful.

So, I can relate...it is no fun.

Hugs..Paula

I check there for so many things.

Hi there,
haven't posted to this list for a long time and i'll keep this brief
because I have to get back into bed cause only lying down are the
hives bearable.
I'm 41, have had RA since I was 14 (they called it JRA then). I was
on enbrel, but when i went to individual insurance after my cobra was
used up i found the cost prohibitive. So I switched to remicade,
since because it's given in the doctor's office, all i pay is the
copay. I'd had it once before but had to stop when I switched jobs,
had no bad reactions.
One week after getting the remicade my body suddenly erupted in
painful, red, itchy hives everywhere. some of my body was bright red.
then I developed angiodema in the face and looked like Frankenstein
with my swollen eyelids, jaw and neck. That was yesterday. Saw my gp
who gave me two shots, prescribed heavy prednisone and a few other
things. the swelling is down but the itchiness remains and new hives
continue to erupt.
has anybody experienced anything like this? Do you think it can be
the remicade, since it was so much later that it started? I hadn't
eaten anything suspect and am on no other new drugs. Didn't get stung
by any bees; there were some small bugs flying around but I don't know
what they were and don't believe they could have caused this.b Doc
says it's not a contact allergy.
Anybody? Thanks!

Hello,

I am Mostafa, 25 years old. I have been diagnosed of RA so recently. I started to take medication since 1 month only.

My medication program is:

- 12.5mg of Methotrexate weekly.

- Vitamin B

- Mobic (pain killer, as far as I know)

I am in Egypt and this disease is not very common. My question is if I follow this program, my inflammed joints will come to normal again. Some joints are not in the normal size.

I want to know some info, like if I follow the program stricly, this will protect the other good joints or it has a probability of affecting new ones.

Are there other better medications?

For medical info:

I have a weekly positive Rheumatoid Factor but strongly positive Anti CCP.

Thank you very much,

Mostafa.

Hello guys,

I am new in RA. I have just known that I have it since April 2006. My doctor prescribed me Methotrexate 12.5 mlg weekly with 1 pill folic acid.

I have many questions concerning this disease. First does the medicine stop attacking the joints? What about the already attacked ones? On the long run, what shall I expect? How does it affect me sexually? Concerning alcohols?

How can I know that the medicine is working well?

I am from Egypt and this disease is not well common.

Thank you very much,

mostafa.

Thank you for the memory helpers.... I could use them.
I know all about Manny....since he was in Cleveland with the Indians
before going to Boston. You're right..there's nothing you can say
about Manny but just that "that's Manny!" My dad was a HUGE Sox fan.
He passed about 2 years before they won the WS. But I know he was
still keeping an eye on the Sox from above. I think he may have
pulled some strings.
Take care...Paula
Ohio

Hello

My mother wanted me to ask this group a question about RA Medication.

She wants to know if its harmful in any way if she doesn't take the medication for RA cause she feels the same on it & without it.

Having problems with my memory is one of the things I find most annoying about either my age (47) , the meds I am on or the Rheumatoid Arthritis, or a combination of the three. I do #2, 3 and 10 all the time and the only thing I watch on TV is the The Red Sox (gotta see Manny being Manny) but I know #1 is where I need the most improvement. I have a set of exercises I am susposed to do 3 days a week given to me by my physical therapist by no way to get to the Y to use their pool to do them. And 4 is a joke, I can't sleep more than 3-4 hrs a night before Mr. Pain is hammering on my hips, knees, and shoulders and forcing me from bed, sometimes in tears. But this was written for "normal" people so those of us with RA or other chronic conditions can use of it what we can.
1. Exercise regularly: Studies have shown that aerobic fitness may reduce the loss of brain tissue common in aging.
2. Stick to a healthy diet: Avoid sugar and saturated fat. And eat lots of antioxidant-rich fruits and vegetables such as blueberries, spinach, and beets. The magnesium found in dark green, leafy vegetables appears to help maintain memory.
3. Learn new things: Mastering activities you've never done before, such as playing the piano or learning a foreign language, stimulates neuron activity.
4. Get enough sleep: Too little sleep impairs concentration.
5. Devise memory strategies: Make notes or underline key passages to help you remember what you've read. Invent mnemonics formulas to help you remember things.
6. Socialize: Conversation, especially positive, meaningful interaction, helps maintain brain function.
7. Get organized: Designate a place for important items such as keys and checkbooks. Keep checklists for things such as daily medications or items to pack when you travel.
8. Turn off the tube: Experts say too much TV watching weakens brain power.
9. Jot down new information: Writing helps transfer items from short, to long-term memory.
10. Solve brainteasers: Crossword puzzles, card games, and board games such as Scrabble improve your memory.
Ila in Maine mailto:sewcraftyila@...
"I'm Halloween's answer to Santa Claus."
--Stephen King

Leah,
Just FYI, my blood tests are normal and I have RA...
Kelly

Dawn,
No, I have been on many cruises and this one in particular I ate ALLOT of
deserts. It was the only cruise that my RA flared up on. But I still had a
good time (smiles). I know for next time to not eat the (as much) deserts
that way I can take my Cytopro and keep the pain and swelling down.
I wont be going on a cruise for a while thou. We just came back from the
Harley shop...........whoops..........guess what we bought LOL
Trish

I don't know, I cried a lot at the beginning, too (I've only been
diagnosed 3 months or so). Partly from the depression and the lifestyle
change, partly from the pain. I still do, although not as frequently. I
think it's a healthy part of the grieving process, although
unfortunately it doesn't take your pain away.
Since you're in such agony, I'd really suggest talking to your doc
soon and trying to get something to help you thru till you know
what's going on...
Good luck,
Kelly

Good Morning everyone. Well I went to the cardiologist yesterday, and
my DX is Sinus Tachycardia. This Dx is usually caused by an
underlying condition. The 2 most common are Thyroid, and Blood Clots,
both of which have been ruled out. So, they don't know what is
causing it, and he said it could very well be the RA. They doubled my
Toprol, and want to see me back in 4 months. If the chest pain
doesn't go away with the meds, I have to go back in for a stress
test. Again Thank You all for your comments and insight on this
matter. Hope everyone is doing well!
Thank You,
Dawn

Hi Melissa....

I have an Ohio medicaid card. There is a number on the front of my card...I called that number and they give you a list of doctors who will see you for a certain disease. I called for a rheumy and all the drs at the arthritis clinic took the medicaid card. Maybe your sisters is similar.

Paula in Ohio

OR...you can find a primary care doctor who specializes in rheum arthritis. There are some.

Paula

Hey Guys,

Hope everyone is well, and no flares. Just wanted to ask a question....does anyone have any information or any experience w/ having a Medical Card and finding a Rheumy who will accept it? My sister who is disabled and on a Medical Card here in WV, just got diagnosed w/ RA also, and we can not find a Rheumy who will take her because of the card. Any suggestions/information would be quite hopeful.

Take care.... [INLINE] [INLINE]

Melissa in WV

Hello everyone! Well I am writing again, looking for some
information. Recently I began having some problems with my heart.
Friday the 5th of May, I was at work and began having chest pressur,
with only a little bit of pain. Within just a few minutes, I hard
pain going into my left shoulder, and about halfway down my arm.
Being only 29 yrs old, I never thought it was actually my heart.
Well as the day progressed, it got progressively worse. By Saturday
afternoon I was in the ER. They hooked me up to all the machines,
LOL. Well my blood pressure was elevated, and my pulse would go up
and down, for no apparent reason. After ruling out a heart attack,
and inflammation around the heart they sent me home and told me to
follow up with my regular Dr. Tuesday I was in his office right
away, and he immediately referred me to a cardiologist. They did an
echocardiogram, which came back normal. They also did a halter,
that I had to wear for 24 hrs, and it also showed the rapid
heartbeats. They did a CT-Scan on my lungs in order to rule out
blood clots, since I am on Humira. They do not seem to have an
answer for the cause, but keep telling me its not RA related. I am
not as convinced. I have been put on 25 mg of Toprol once a day.
Has anyone else experienced anything like this? Again my syptoms
are.... rapid heartbeat, chest pain and pressure, shortness of
breath, and even more fatigue. The more active I am, the worse it
is. It even wakes me in my sleep! Any thoughts would be greatly
appreciated.
Thank You,
Dawn

Hi all. I posted a couple of weeks ago. Telling you all about my
symptons and the fact I was seeing a rheumy about a year ago and
nothing showed up in my bloodwork but he thought it was ra. I
didn't want to go down the prescription route and couldn't
understand why nothing was showing up in the bloodwork when I knew I
was in pain. So I stopped going for about a year and just lived
(mind you not very well) with the pain. Well I went back today - 11
blood tests all came back fine. He is pretty sure I have
fibromyalgia and osteoarthritis in my knees. He felt points all
over my body and asked if I had pain and some I did some not. He
asked me about my sleeping (lack of) feeling exhausted all the time
and my achiness and joint pain or muscle pain all over. He's
started me on celebrex and a low dosage anti depressant to take
before bed to help with the sleeping. I was suprised at first and
told him I"m not depressed. He stated its shown to help with
fibromyalgia patients. So I'm actually looking forward to trying
these out to see what type of relief I get. I go back in 6 weeks.
I started off by being upset at first when he said the bloodwork was
fine. Last year he thought it was the start of RA but he's now
thinking differently. Do any of you have fibromyalgia and any
suggestions with coping?
Sorry so long..

Hi Leah...

Just take it a day at a time. When you see your doctor, he may have some answers for you. It's hard for anyone to say unless they're a doctor and have done the blood work and tests. Try not to worry about it if you can...I'm sure your doctor will have some answers for you soon.

Paula

Cutting out sugars is not a food group. It is an ingredient in most foods.

Not using bleached flour is not cutting out a food group it is changing your flour

Cutting out pancake mix and cake mixes is not cutting out a food group it is cutting out some processed foods with bleached sugar and bleached flour.

Cutting out soda..........soda is not a food group.

Changing your diet is cheaper then going for allergy tests.

Trish

Good Morning folks,

My file (rheumatologist's) flagged me as a potential candidate for a study on rituxan for moderate to severe RA. I was contacted last week, then sent written literature and consent forms. If I pass the screening, I will be eligible for the study. Information seems very complete, and I also had several family members as well as DIL, who works at Cornell and is familiar with study procedure, examine info. All said it seemed very thorough and could be beneficial if I qualify and am actually receiving the med instead of placebo.

I wondered if anyone else here is in or considering being a part of such a study as well? Would you be able to share your experience or feelings on this? Appreciate it. I am leaning strongly towards it as have been in a flare for over six months now after being in "almost remission" for quite a while. I tolerate the pain, but it would be so nice not to have it. I think the fatigue is worse than the pain. Want to do so much, and just don't have the energy.

Thanks and gentle hugs,

Chris (in Western NY)

Hi all:
I was crying last night because it hurt so much I mean my joints
and whole body hurts. They are checking me for lyme disease and
rheumatiod arthritis. If I got this what do they do for it? Does it
sound like I have RA?
Take Care all.
Leah

Leah,
You need to change your diet.
If you eat a lot of sweets STOP. If you drink alot of sodas STOP.
Cut out all sugars and bleached flour and all chocolate.
If you eat a lot of the above Items and stop them right now. You will
experience some relief by your third day.
You may also want to cut out green peppers and tomatoes because in some
people these vegetables set their arthritis off to hurting.
Also increase your intake of water to 3 quarts a day. This will lubricate
the joints and help relieve the pain in the joints.
I know all this works because I was RXed in my 30s with RA and I am now 50
and I am not on meds. I am on the diet I mentioned above and I take
vitamins/supplements. I have no symptoms at this time of RA. But when I go
on a cruise and eat a lot of the deserts..............my joints swell and I
am in sooo much pain. So then i go home and get back on my diet and drink
lots and lots of water and take extra vitamins/supplements that target my
joints and I am back to normal in 3 days.
I hope you feel better soon.
((gentle hugs))
Trish

Leah - if you can get in and out of a tub - tub soaks help too. I haven't been able to get in and out of the tub since this has happened to me - 3 years now - I'm 47 - so I have to do the warm shower route. At first tho - even standing that long for the shower exhausted me - I'd have to sit on the toilet to recoup. My boyfriend had to dry me off - couldn't do all of me at the time I was so bad. I hope that you get answers and relief and information soon. Also, not everyone gets positive RA factor results - some people have it for years and have normal counts.
Helen P.
NW ohio
Melissa Gleason <gleasongirl76@...

John,

I do the same thing, nice long hot shower...it helps me A LOT. I bought a shower massaging head that had 4 different settings, and it detachable, it is absolutley wonderful!!
john stratton <kentuckycowboy2@...

Hi Leah ,
Hope he gave you something to ease the pain abit that's how mine felt so long ago ,, Well good luck and don't forget try heat and ice if you can isote it ,,, a good long shower seems to help at times .
John
leah <leah131@...

Hi all
I'm Leah 25 years old. On tuesday night I started to complain about
my neck hurting me so I went to the doctor on wed and thursday cuz the
next morning I started to hurt all over to the point where I was
crying. My joints was hurting me. My doctor send me for blood work to
check if I have rheumatoid arthritis. Does it sound like I have it?
What other symptoms are there to it? What treatments & medications are
there? Write Back Soon
Take Care
Leah

I hurt all over. I mean I am in pain and my joints hurts alot too, My
family doctor gave me some meds to take for the pain...
Leah

Hi all
I'm Leah 25 years old. On tuesday night I started to complain about
my neck hurting me so I went to the doctor on wed and thursday cuz the
next morning I started to hurt all over to the point where I was
crying. My joints was hurting me. My doctor send me for blood work to
check if I have rheumatoid arthritis. Does it sound like I have it?
What other symptoms are there to it? What treatments & medications are
there? Write Back Soon
Take Care
Leah

Hi all I went back to doctor today as I was in alot of pain to the
point where I was crying. they are checking me for lyme
disease and rheumy arthisis. If I got this what do they do for it?
Take Care all.
Leah

I am a new member I think, hahah. I joined a long time ago to a group
like this one but I don't know if this is the same one. So if it isn't
the same one then yes I am new here. My name is Pat and I have severe
R.A. Sometimes it is nice to talk to someone who knows and understands
how I feel. Right now I'm kinda tired so I will be back on later. I
hope to find many friends here. God Bless

Hello All
I am really concerned about my mom.
She has had RA for like a little over 1 year now.
She is in SUCH pain, its not even funny. SHe went on this medication, not sure the name that helped
her alot, but now, her doctor had to take her off of it cause it is effecting her kidneys.

Now that she is off the medication that helped her, she could barely walk, forget about trying to get
up off the couch.

She is in such pain, it hurts me! She has been soooooo depressed this passed weekend & i don't know what i could do to help. I don't want my mother to feel this pain, i rather have it then her.

Anyone in major pain like my mother is/??

PLEASE HELP

I'm sure tylenol will be fine... Paula

Hi Sierra.....that's wonderful!

I know my rheumy tells me not to suffer with the pain and take my darvocet when I need it.

I'm glad that you feel better.

Hugs..Paula

Have a good weekend.

Hi Sierra.....

I take darvocet for pain and I am on prednisone and arava. I'm sure someone else can help you more than I can.

Paula

Hello, I am tapering off this Prednisone burst and the pain is creeping
back. I tried to reach the rheumy this a.m. to ask if, and what, pain
med. I can take with the Prednisone and Arava I've got on board. I have
a supply of Celebrex, and OTC meds--Advil and Tylenol Arthritis. My
call was returned by an assistant who asked a couple of triage
questions...sounds like I won't hear until Monday.
If you were me, would you take anything for pain? What would you take?
Sierra

hello every1

i put curry in soups it dose help it make feel nice warm and it helps if u have a cold too.i put about 2 - 4 pinchies in it i put it in ramen noodle soup its got strong smell butt it make me feel better les sore. i have had r a since 97 and i had to stop horse back riding last summer cuz of dam r a.i retierd my horse in nover of 04 and i retierd in august of 05

tty tc jackie

john stratton <kentuckycowboy2@...

Yea thats ture ,
even harder is finding something to clear it up seems none of the regulars help me ? have you fould anything ? I've tryed a cream from the Dr, hydrocrodisone , neosporion , special lotions , benadrill for the itchyness ,, maybe the neopsorin might help a very little not much that may be where i scratch or the blisters bust one ?
thanks
Angela <angelac71@...

Same with me John. I break out with a horrible itchy rash on my arms. My son plays baseball and I'm in the sun for a few hours on Mondays and Wednsdays. I try to use an umbrella when its just to hot to cover up with long sleeves or a jacket but I still mangage to break out. I wish I could find an umbrella with UV protection ( No luck yet). My arms finally get better during the winter and here I am sitting at baseball again, started a few weeks ago. I got my first itchy bumps on my hands last week [INLINE] . If you ever find something that works please let me know, I have tried sunblock and that seems to make it worse or just doesnt work at all. The only thing that seems to work is covering up. When its 80 plus degrees outside theres noway !!

Angela in Michigan
john stratton <kentuckycowboy2@...

Yes, an hour in the sun and i'm scrathing like a dog with the mange ,, and get an aweful red rash with blisters on my arms the whole lenght of both them ,takes forever to get rid of it to,,,, my rumhey says it's a thing with the meds and the sun .
john

I didn't know that about Enbrel, thx! I have heard that just 15 minutes
a day is enough, hopefully we could manage that much :)
Regarding watches and rings, I always used to break out in the worst
rashes. Took me years to find out it's a nickel allergy, so I can't wear
anything but the finest silver and gold, ha :)
Kelly

Anyone every been afflicted with MRSA type staph infection?
My mom, who also has RA and is obviously on drugs to suppress her
immune system just got diagnosed with this. It's been horrible. My dr.
says it'd be best if I avoided contact with her while she has it. I've
read it can be really hard to get rid of and some people never really
do, that it just lies dormant and then comes back.
Any info?
Thanks

I have a work trip which will mean I will I have to fly with my
humira. Has anyone done this? Do you need a doctor's note? I'll use
the Humira cooler and ice etc - I'm just concerned about the security
folks freaking over the needles.
Thanks!
susan

Ardeith writes: Thank you. I learned a lot about coping over the last
thirty-some years......glad someone can use some of it.......now, ask me how
I manage to crochet with these hands of mine, hummmmm?
Ardy

Just an FYI...
I did my fifth shot of Enbrel on Friday and decided to try putting
a Bandaid on it thinking that maybe the site rash came from rubbing
against my clothes. So far, so good, I haven't had a reaction yet. So
maybe that can help those of you who get that same rash...
Kelly

I didn't know that about Enbrel, thx! I have heard that just 15 minutes
a day is enough, hopefully we could manage that much :)
Regarding watches and rings, I always used to break out in the worst
rashes. Took me years to find out it's a nickel allergy, so I can't wear
anything but the finest silver and gold, ha :)
Kelly

How many of you can't wear cheap jewelry? If I try anything that is
silver or gold plated, my body eats the coating off within a week or 2.
I also have trouble with wrist watches-in that the batteries don't last
as long as they should.

I was on it for 2 months and it didn't help, although I had virtually
no side effects. I did develop stomach problems which are probably
an ulcer, but we're pretty sure that's not Arava related...
Kelly

I'm amazed at how
It is overwhelming and yes, not very many people understand. That's a
lot to deal with as far as young and disabled kids, sorry you're going
thru that :(
I'm recently diagnosed and am still reeling at how my life has changed.
I hope you can find some relief with medications soon...
Take care,
Kelly

Yeah, I had that, too, and my rh put me on prescription vitamin d,
a huge dose, and my next testing showed normal. Guess my daughter
was on the right track when she said, 'you should get out in the sun
more, mom.' :)
Kelly

Hi Diana,

This is Steph in VA. I don't know about Humira, but I take Remicade. When I was unemployed Centocor's (Remicade's manufacturer) patient assistance program picked up the cost. I was approved for assistance in 48 hours.

I have some experience fighting with insurance companies. I'd be happy to help you if you want, just email me privately.

Take care,

Steph

My name is Diana and I live in Colorado. I have had RA for 5 years now and I am currently on MTX, Celebrex, prednisone and most recently added Humira.
However, every treatment option that my rheumy recommends is met with obstacles from Pacificare. They hold up treatment due to "pre-authorizations" and charge me outrageous amounts for my co-pays. I pay them about $600.00 a month for healthcare insurance, yet they make me pay nearly that much a month in co-pays for my meds and make me jump through hoops before-hand. I am only able to work part-