Re: Nothing shows on tests.

[Guest guest]

RA is a very tricky disease. It is also very hard to live with. I personally take remicade. Once very 8 weeks with MTX 6 mg twice a week. You have to understand that taking medication is something that is necessary. The minute you stop, the delicate balance between a managed disease process and quality of life, suddenly creeps in and you are in a world of pain. Discuss the dizzy spells with your Doctor. Find out if some of the meds you take can be taken at night to avoid side effects. I keep my pills in a small drawered utility box, that you usually store screws and nails in. You can pick those us anywhere. I put my monthy dose of pills in there, with small labels on them, that way there arent alot of bottles laying around. I write down the prescription numbers and use that to make refills instead of using the bottle. My little utility box has 9 drawers, and can be tucked in a nightstand, or in a cabinet in the kitchen, or bathroom. Its very small and you just pull out the drawer, take the pill and voila you are done. Its good to keep your meds in the bedroom nightstand or on top. Just leave a glass of water there, and you can take them in the am when you get up, and pm when you go to bed. Your numbness and dizziness is something your Rheumatologist should be able to help you with. Yours, Deborah

[Guest guest]

There are seven criteria developed by the American College of Rheumatology to diagnose RA and any four qualify for a positive diagnosis. One is blood work, one is damage seen on x-rays, and the other five are patient history and doctor examination.

1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks2. Arthritis of 3 or more joints, lasting for at least 6 weeks3. Arthritis of the hand joints, lasting for at least 6 weeks4. Symmetric arthritis, lasting for at least 6 weeks5. Rheumatoid nodules6. Positive rheumatoid factor (blood test)7. Joint changes on x-ray

I don't think any of us want to take our medicines but even more we don't want to be crippled with permanent joint damage. There is no cure yet for RA but they keep working trying to fine one. Maybe someday.

Make sure you tell both your rheumatologist and your GP about your other symptoms that may be from the medicines or may be totally unrelated to RA. I hope you get them corrected. God bless.

----- Original Message -----

From: MrsCoylie

Rheumatoid Arthritis

Sent: Sunday, August 21, 2005 2:02 PM

Subject: Nothing shows on tests.

My rheumy told me this summer that the original diagnosis of Palendromic Reumatism has moved into RA. Although I was aware 30% of the people with PR can gointo RA, I'm still having problems with this. It is very difficult to say OK, I've got RA when nothing has ever shown up on tests. My x-rays are all good. I'm toldthat is because she put me on the aggressive drugs first. It showsthe drugs are working. The problem is, the drugs may be keeping theflares lessened, but I'm getting horrible dizzy spells, where thewhole room spins, My left hand is partially numb most of the time,I've gone from 2-3 migraines a year to 4 this month so far.I want to stop the meds, but I'm afraid the joint destruction willstart. It kills me to have my kids see me taking so many drugs. Whenyou add in the Vitamins to counter act the effects of the drugs, alsomigraines, asthma, and allergies, it's just sick.My joint problems have always been symmetrical, hands, wrists,shoulders, elbows, knees, feet. Some obvious swelling, but nothingscary to look at. Some redness, and heat during flares but mostly badpain, weekness and exausion. I'm told I fold in on myself. My flares coincide with my monthly cycle, although that is not the only time Iget flares. I'm so afraid of my joints breaking down, I really feel I'm stuck. It would be easier to follow the program if the tests were positive. Anyone else with no positive test results?

[Guest guest]

----- Original Message -----

From: dbargad@...

> Its good to keep your meds in the bedroom nightstand or on top.

Unless you have small children or pets in the home, of course. If so, then you need to keep them out of reach.

Nina

[Guest guest]

Here I'm one !

but my x-rays show differant ! i've lost my knees to

o/a though but my toes and joints in the center of my

left foot to r/a already while on the aggressea meds

to . but as for the other test all negitive allways

even the sed rate so dont let those get you down if

your x-rays show no joint damage i wouldnt let no one

pull me off the meds for no reason !!!!! i've had to

give up my caraer just resently and have lost my

insuranse allso and am fighting spending and runing

and shifting things just to try to get on the state

system what a crock my toe joints went in the last six

months while on the remicaid and mtx so still negitive

though !

john

--- MrsCoylie <dkcoylie@...> wrote:

> My rheumy told me this summer that the original

> diagnosis of

> Palendromic Reumatism has moved into RA. Although I

> was aware 30% of

> the people with PR can gointo RA, I'm still having

> problems with

> this. It is very difficult to say OK, I've got RA

> when nothing has

> ever shown up on tests. My x-rays are all good. I'm

> told

> that is because she put me on the aggressive drugs

> first. It shows

> the drugs are working. The problem is, the drugs may

> be keeping the

> flares lessened, but I'm getting horrible dizzy

> spells, where the

> whole room spins, My left hand is partially numb

> most of the time,

> I've gone from 2-3 migraines a year to 4 this month

> so far.

> I want to stop the meds, but I'm afraid the joint

> destruction will

> start. It kills me to have my kids see me taking so

> many drugs. When

> you add in the Vitamins to counter act the effects

> of the drugs, also

> migraines, asthma, and allergies, it's just sick.

> My joint problems have always been symmetrical,

> hands, wrists,

> shoulders, elbows, knees, feet. Some obvious

> swelling, but nothing

> scary to look at. Some redness, and heat during

> flares but mostly bad

> pain, weekness and exausion. I'm told I fold in on

> myself. My flares

> coincide with my monthly cycle, although that is not

> the only time I

> get flares. I'm so afraid of my joints breaking

> down, I really feel

> I'm stuck. It would be easier to follow the program

> if the tests were

> positive. Anyone else with no positive test results?

>

>

>

>

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hi.

Very similar situation with myself. The RH factor (is it that or RA

factor?), always comes up negative. My joints were swelling bi-lateral

throughout my body...with some redness and severe swelling when first

diagnosed. Since drug treatment for RA, the swelling is no where near

as bad. Also, I seem to have a bad 3 out of 4 weeks in the month. My

flare starts up with my monthly cycle as well. My Rheumy said that is

common for women, not sure why.

I too worry about the meds I am on. I'm only 34 years old and can't

imagine how I am supposed to keep taking MTX, Plaquenil, Prednisone

and all the other stuff I am on for any length of time. The side effects

from the meds is mind-boggling. My Rheumy is hoping that the med

combo will shock my system into a bit of remission. It's been 7

months, and my symptoms have lessened, but I still have quite a bit of

pain. I am going for a second opinion....just waiting for my GP to refer

me to another Rheumy to see if there's anything else that can be done.

Hang in there.....keep strong, and always seek out a second opinion if

you're ever in doubt of the treatment you are receiving.

All the best,

> My rheumy told me this summer that the original diagnosis of

> Palendromic Reumatism has moved into RA. Although I was aware

30% of

> the people with PR can gointo RA, I'm still having problems with

> this. It is very difficult to say OK, I've got RA when nothing has

> ever shown up on tests. My x-rays are all good. I'm told

> that is because she put me on the aggressive drugs first. It shows

> the drugs are working. The problem is, the drugs may be keeping the

> flares lessened, but I'm getting horrible dizzy spells, where the

> whole room spins, My left hand is partially numb most of the time,

> I've gone from 2-3 migraines a year to 4 this month so far.

> I want to stop the meds, but I'm afraid the joint destruction will

> start. It kills me to have my kids see me taking so many drugs. When

> you add in the Vitamins to counter act the effects of the drugs, also

> migraines, asthma, and allergies, it's just sick.

> My joint problems have always been symmetrical, hands, wrists,

> shoulders, elbows, knees, feet. Some obvious swelling, but nothing

> scary to look at. Some redness, and heat during flares but mostly bad

> pain, weekness and exausion. I'm told I fold in on myself. My flares

> coincide with my monthly cycle, although that is not the only time I

> get flares. I'm so afraid of my joints breaking down, I really feel

> I'm stuck. It would be easier to follow the program if the tests were

> positive. Anyone else with no positive test results?

[Guest guest]

Dear Mrs. Coylie,

Hello. This is Steph in VA. Sorry for my late reply. My work is very busy so I haven't had much time to reply to emails. Welcome to our group. As others have said, you can have seronegative RA. It means you test negative for the rheumatoid factor. I'm 27 and was dx'd with arthritis in 1999 when I was 22. I was also put on agressive drugs at the beginning which is why I do not have much damage. I started methotrexate 2 weeks after I was dx'd. I'm still on it as well as prednisone, folic acid, azulfidine, flexerall, ibuprofen & remicade.

I am in what my rheumy called medication induced remission. If I stop the meds I will stop the remission. It took me about 6 months to really believe I had arthritis. It didn't help that 12 doctors over 2 months couldn't dx me when my symptoms were the worst. When doctor 13, a rheumy, said arthritis I laughed at him! Little did I know that there are 100 different types of arthritis and a rheumatoid factor is only 1 symptom of 1 type of arthritis.

Welcome to our world. It's a crazy ride.

Take care,

Steph in VAP.S. Side note --- I'll be 28 on September 10th. Woohoo! Made it another year! Most of my friends try to ignore their bdays but I say 'bring it on'. Another bday means I've made it through another year of challenges