Re: Undiagnosed but Hurting!

[Guest guest]

hi bev, i am rae and i also am new to this group, about one week now...

my doctor said that the tests do not always tell the truth and test alone can

not diagnose RA... he or she has to do a physical test and take in to on going

compaints... maybe you need to see a rhuematologist...

well, i hope you get some treatment, i hate pain pills... i prefer prednisone

and that is not good for ya! what are we supposed to do??? ha ha ha

good night .. rae~

[ ] Undiagnosed but Hurting!

Hello,

I am new to the group. Having a little extra time today and hurting

more than usual I decided to do some research. I was tested for RH

and Lupus 3 years ago and everything was negative except my ANA is

positive but low. About a month ago my family doctor tested me again

and it is about the same. She feels I probably do have RH as she

knows others who tested negative for years before showing positive. I

see a rheumatologist and have taken sulindac (generic for what? I

don't remember)for three years. I quit for a short time about 1 1/2

years ago thinking I was imagining the pain but within 3 days I felt

like I'd been run over by a freight train and I ached all day instead

of just in the morning. My pain and stiffness started at 28 years in

my right hip. After 6 months it moved to my left hip but didn't last

as long. A few years later my right elbow got so bad I couldn't lift

a gallon of milk and then that moved to my left. My elbows are never

without some pain. Now my shoulders hurt so bad I can't get

comfortable in bed much of the time. There have been many

other " pains " that are probably related but too numerous to mention.

My sister was diagnosed at age 28 and I have a cousin who became

disabled by his mid-thirties and has had many joints replaced for the

second time. My great-grandmother on the other side of the family

also was in a wheel chair with " rhuematism " . My main concern is, if

I do indeed have RH, how can I get preventative treatment? It seems

all anyone wants to do is try to cover up the pain. I am 50 years

old and love to snowmobile, motorcycle and hunt with my husband. I'd

like to think I can continue this for at least another 15 or 20 years

but I think I am getting worse fast. I'm frustrated and looking for

advice and support.

Thanks, Bev

[Guest guest]

Welcome Bev. I¹ve tested negative for RA for well over 25 years. My labs

only indicate inflammation. A dignosis of RA isn¹t made from just blood

tests. There are people with a positive rheumatoid factor that never

develop RA.

Sulindac is generic for Clinoril, which is an anit-inflammatory. All it

does is control inflammation and doesn¹t slow the disease process. It¹s to

bad your rheumatologist isn¹t treating your disease. He is only treating

your symptoms.

It may be a good idea to see another rheumatologist.

Here¹s info in sulindac:

http://www.medicinenet.com/sulindac/article.htm

It sounds like you have a strong family history of RA. To treat RA, you

need to be on a DMARD (disease modifying anti-rheumatic drug). DMARDS can

slow the progression of RA. There are many to choose from with plaquenil or

methotrexate commonly being the first prescribed. Research shows that the

sooner you get on a DMARD, the best chance you have to slow the progression.

There is no cure, only drug induced remission. There have been rare

instances of total remission. The best we have right now are DMARDS. I¹m

on Enbrel, one of the Biologicals. At the bottom of each email there is a

link to my website with a lot of info. You will learn all you want about

these rheumatic diseases from that site and all the wonderful members of

this group.

Web pages for our group: http://rheumatoid.arthritis.freehosting.net/

a

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>

> Hello,

> I am new to the group. Having a little extra time today and hurting

> more than usual I decided to do some research. I was tested for RH

> and Lupus 3 years ago and everything was negative except my ANA is

> positive but low. About a month ago my family doctor tested me again

> and it is about the same. She feels I probably do have RH as she

> knows others who tested negative for years before showing positive. I

> see a rheumatologist and have taken sulindac (generic for what? I

> don't remember)for three years. I quit for a short time about 1 1/2

> years ago thinking I was imagining the pain but within 3 days I felt

> like I'd been run over by a freight train and I ached all day instead

> of just in the morning. My pain and stiffness started at 28 years in

> my right hip. After 6 months it moved to my left hip but didn't last

> as long. A few years later my right elbow got so bad I couldn't lift

> a gallon of milk and then that moved to my left. My elbows are never

> without some pain. Now my shoulders hurt so bad I can't get

> comfortable in bed much of the time. There have been many

> other " pains " that are probably related but too numerous to mention.

> My sister was diagnosed at age 28 and I have a cousin who became

> disabled by his mid-thirties and has had many joints replaced for the

> second time. My great-grandmother on the other side of the family

> also was in a wheel chair with " rhuematism " . My main concern is, if

> I do indeed have RH, how can I get preventative treatment? It seems

> all anyone wants to do is try to cover up the pain. I am 50 years

> old and love to snowmobile, motorcycle and hunt with my husband. I'd

> like to think I can continue this for at least another 15 or 20 years

> but I think I am getting worse fast. I'm frustrated and looking for

> advice and support.

> Thanks, Bev

>

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