Hi, Looking for Answ

iVillage Member
Registered: 02-17-2005
Hi, Looking for Answ
11
Thu, 02-17-2005 - 8:38pm

Hi,

I have had RA for a couple of years. I've been diagnosed by three different doctors, just to be sure. I have been in alot of pain recently and I've been wondering about starting Ebrel or something like it, but I don't know what the definition of moderate RA is? To me the pain is pretty intense and keeps me from doing alot and I am tired all the time - but my doctor's all tell me I'm not sufficiently swollen in my joints. I can see the swelling - when I lay my hand flat my knuckles are mere indents on my hands and the spaces between them are swollen. I also have pain in my elbow, shoulders, knees and ankles. One doctor did a bone scan and it showed degeneration in all these areas - but I guess its not a test that's usually used and so no one's very impressed by it. Has anyone had similar problem?

Thank you,

Avin

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iVillage Member
Registered: 03-25-2003
Thu, 02-17-2005 - 8:59pm

Welcome to our board, Avin. This is a great place to come with questions. We are not doctors, we can only give our opinion. I have a couple of questions for you? RA stands for Rheumatoid Arthritis. Are you seeing a Rheumatologist? If you have RA, you should be seeing one. RA is treated by drugs like Enbrel, but you are not usually started on it at first. The insurance companies throw a fit!! The belief now-a-days is to treat RA aggressively, to prevent joint damage. Moderate or severe, you are in pain and should be on RA meds, if you do have RA. Another thing you mentioned is that there is degeneration, which usually is Osteoarthritis (OA). They are treated differently. Do you have OA? You can have both. I have been on Enbrel and have had good results from it. It is one of the new biological drugs used to treat RA. If you have OA only, you do not need these types of drugs.

As I said, this is just an opinion. You need to see a Rheumatologist (rheumy) and he should be able to answer all your questions.

Hugs,
Vicki

iVillage Member
Registered: 04-08-2003
Thu, 02-17-2005 - 9:50pm

I have degeneration caused by RA...the inflammation eventually damages the bone and joint structures. Mine was also first only visible by bone scan which is a more detailed look at the bones than a regular xray although now after 4 yrs, it is also present on my hand and feet xrays. I would highly recommend that you be on a DMARD or biologic agent of some kind. I have some joints that are not swollen but tender. My rheumy counts swollen joints and tender joints as signs of my active RA. And you can have a lot of pain and fatigue from RA without a ton of swelling. If you can't get the right assistance from the dr you are seeing, you should get a new rheumy and fast. RA is best handled with agressive treatment early on to prevent joint damage from occuring as it is a chronic, degenerative joint disease.

Heidi

PS Hi VICKI!!

iVillage Member
Registered: 03-25-2003
Fri, 02-18-2005 - 1:33am

Hi Heidi!

My primary doctors have told me that my degeneration is OA, now I wonder if it really is. Why can't we all find the perfect doctor?? Are you still flying to Seattle for your rheumy?

How are you feeling, Heidi?

Hugs, Vicki

Glad to see you back on the board!

Avatar for dfyrabnd
iVillage Member
Registered: 03-25-2003
Fri, 02-18-2005 - 2:40am
DITTO!!! Well said Heidi.
iVillage Member
Registered: 04-08-2003
Fri, 02-18-2005 - 6:37am

Hey Vick!

You may have OA too. Joint damage due to RA and OA are a bit different and can affect different joints. My father in law has severe knee OA...the cartilage is almost gone and he has had to two knee replacements. His leg bones were rubbing bone on bone with nothing in between to protect the bones. It was caused in his case by many injuries when he was younger. RA degeneration is most commonly bone erosion and joint destruction caused by inflammation, not by wear and tear. OA is most commonly found in older people or in younger people in a joint damaged due to an injury. That is how it has been described to me.It can be confusing. But the bones and joint do degenerate with RA, sometimes severely. I have unstable ankles from my RA. That is my worst place although I have bone erosion showing in my hands and feet also.

I am doing ok...really miss my Vioxx though. I am having alot of tummy troubles trying to find a new NSAID. With the Crohn's, my stomach and intestines are very sensitive. I have had to go up to 25 mg of MTX too which is hard for me. If that doesn't work, I have to go back on Prednisone which I finally got off of after 4 yrs. I really would like to stay off but the only thing keeping me from it right now is Kadian (a time release version of morphine). I am having a lot of troubles with my index finger joints and thumbs along with my ankles and big toes. I just hope I can avoid surgery. I am still on Enbrel but it is not my wonder drug. They are still trying to convince me to try Remicade but I would have to have a port put in my chest because my veins and IV's do not mix. So I will hold off as LONG as possible for that. I am not convinced it would be any better. I am waiting for something new to come along.

Congrats on your grandbaby in the oven!!! I am so excited for you!! I am glad they got you back on meds and that the problems in your lungs are not RA. That is one thing I fear, organ inflammation. That is a part of living with RA that frightens me.

Talk to you soon!

Heidi

iVillage Member
Registered: 11-03-2003
Fri, 02-18-2005 - 1:02pm

Hello Avin and welcome to the Rheumatoid Arthritis message board.

Molly

iVillage Member
Registered: 03-25-2003
Fri, 02-18-2005 - 1:37pm

Thanks Heidi! I do have OA too. My mother had it and was in terrible pain.

Hugs, Vicki

iVillage Member
Registered: 02-17-2005
Fri, 02-18-2005 - 5:34pm

Thank you for your help, all. My neurologist said that the "hot spots" on the bone scan were so symetric that it was definately the RA. I do have a rheumy - I have been seeing him for two years. I desperately want to be on Enbrel, but my doctor is afraid because I have really bad asthma = and then I get lung infections. Enbrel is my only choice because it wears off the fastest in case I do get a lung infection. Sigh. I really appreciate everyone's welcome and information. I certainly feel more normal. The doc's so often make me feel like I'm the only one that feels this way.

THANK YOU!!!!!

Avin

iVillage Member
Registered: 06-11-2004
Sun, 02-20-2005 - 11:34am

Hi Heidi,

Who do you see (or did see) in Seattle? Just curious....mine is with University of Washington
Susan

iVillage Member
Registered: 11-03-2003
Mon, 02-21-2005 - 5:06pm
Avin, I wasn't aware of the asthma and, truthfully, I don't know if having asthma precludes you from using Enbrel.

Molly

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