Rheumatoid Arthritis Support Group

Hi Everyone,

I’m so glad I found this group. I’m 40 years old, I haven’t gotten a diagnosis yet, but I have been seeing a rheumatologist for almost a year.

I first noticed joint pain (mostly in my knees, but also in elbows) in spring 2011. My primary sent me to a rheumatologist who ordered several rounds of tests and put me on Naproxen. In October 2011, my rheumy reported a problem with my red blood cell count—my hemoglobin was a 6 (12 is normal). I was hospitalized (for the first time in my life) and given two blood transfusions. After many, many tests, it was discovered that I had a B12 deficiency (pernicious anemia)—I now get a monthly B12 injection and see a hematologist. I was then sent to a GI doctor who did an endoscopy to determine why I wasn’t absorbing 12. He diagnosed me with atrophic gastritis—an autoimmune condition which attacks cells that absorb the B12. There is no treatment for this, but I am having another endoscopy next month.

In the meantime, my joint pain continued and has gotten worse. I still have problems with my knees and elbows, but now I notice it most in my wrists. When I wake up, I have a burning sensation (along the thumb side) and a lot of stiffness—I have difficulty straightening the fingers on my right hand. After I get moving they tend to loosen up, but they’re still tender.

I saw my rheumy last week—recent bloodwork showed I had a "positive ANA with negative serologies." He is sending me for an ultrasound of my wrists (he noted that my right wrist looked swollen). I asked him if we are getting close to a diagnosis and he said I have some type of arthritis, autoimmune in origin. He thinks the ultrasound will inform what tests I need to have next. He prescribed prednisone (10 mg/day) but after reading about the nasty side effects, I am sticking with NSAIDs, at least until I get a diagnosis.

So…if you’ve gotten this far, thanks for reading! ☺ I’m sure many of you have dealt with the frustrations of trying to find out what’s wrong (coupled with the crazy amount of time it takes—mostly due to not being able to get appointments for months). Anyone else have any experience with B12 deficiency and how it relates to all of this?

Thanks again,

Kathy

Welcome Kathy.... you came to the right place for questions to be answered and friendly, kind people to vent/whine/laugh with. LOL

I have heard your story many times where it has taken forever to get a dx from the doctors... I was so lucky in that aspect I guess... went to clinic they did blood work, sent me to a Rheumey (got my appointment 2 days after I called) and had a dx the next week since I was positive with all the blood work.

Sorry it is taken so long for you. I do have to say the prednisone worked to get my swelling down, with little side effects. With the swelling down I could at least wear shoes and be comfortable in it as my feet were so swollen. When is your next appointment? Hope you find out something soon! Good luck

Cindy

Hi Kathy, welcome to our group. I can't say that I have a similar experience, but know that we are here to support you in any way we can. Like you, I have resisted prednisone for several reasons. I was diagnosed almost 2 years ago, and sometimes I am tempted to take it for the immediate pain relief. Please know that I will support you through the questions, concerns, and issues that go along with a diagnosis and treatment. I am looking forward to getting to know you.

Thanks for the warm welcome! My next appointment is August 7, but I am *hoping* that I can discuss the results of tomorrow's ultrasound with my doctor prior to that.

Kathy

I was dxed with Pernicious Anemia a few years ago. You are right, there is no cure but is a safe treatment.

I take 2 shots a month. I have taken weekly ones as well. Sometimes I take a shot every ten days.

Mine was found by a neuro after exhibiting memory loss symptoms. Though, easy to treat PA can be dangerous if not taken care of.

I read several articles that stated it takes an average of 3 years before final dx of RAD is made. Many folks can go back and find their symptoms actually did begin around that timeframe.

The reason it takes so long to dx, in my opinion, is the benefits of the meds used must throughly be weighed against the risks before putting into your body.

I think you will find a wonderful support group here. These people are amazing.

Hugs

Post edited by: bits, at: 07/09/2012 08:17 AM