help me understand

[lusamo]

I am a 55 year old female, very active. I have had Raynaud's for years and always showed a negative ANA. I had Hashimoto's 20 years ago and thyroid surgery. I only decided to go to a Rheumatogist just to get a good workup about two years ago. All of my blood work has been great until now. I'm in generally good health, but my recent blood work showed a positive ANA and elevated anti-centromere antibodies. My Rheumatologist says that I do not have sclerderma(my fear), but that it appears I'm on the road to Lupus. I have never heard of these tests and am very frightened although my doc was not so. There is a strong history of autoimmune diseases in my family, most have been mild. He did start me on Plaquenil which helped the arthritic pain. He told me that if I didn't "develop" anything in 5 years that he would take me off of it. What do I do now?

[myproblem]

You can e-mail me ***@****, and we can compare notes. This has been a 15 year hard road to diagnosis for me. You can read more about me in my post in the symptoms forum.
(Liver trouble / Autoimmune disease - myproblem 02/22/2006 )

[lusamo]

I have an appt. with the Rheum tomorrow and maybe will get a little clarification. I'm probably worrying for little reason. Like you said, maybe this is the very early stages of scl and I won't get a lot worse. My son-in-law, a dr., but not a Rheum says that he has one pt. with scl whose only manifestation was tightened fingers, toes and Raynaud's and she has lived for twenty years like that.  A truly wonderful story.  That would be an answer to a prayer, wouldn't it? Thank you again for your encouragement and I sincerely hope that you are doing well. You sound as if you have all of this under control and do so well with handling it. Having that peace is a gift. Please stay in touch. I need, right now, to feel as if I "know" one person who understands.

[myproblem]

I'm so glad the Plaquenil is working for you. It's so cheap, and low risk, as well as being long tested. You are probably in the early stages of Scleroderma, and possibly will only develop Limited, or CREST. Maybe the rheum. just didn't want to scare you until he was more sure.

[lusamo]

Thank you very much for your information. I just feel like my Rheumatologist was a bit misleading-- I don't know if anyone has EVER had Centromere antibodies and then didn't develop the diease. That's just one question. What I have learned is that 95% of the people who have these antibodies have sclerderman, not too much left to chance as far as I can tell.
As far as symptoms, the only one I've ever had was Raynauds and some joint pain. Within three weeks of taking the Plaquenil, the joint pain is virtually gone.  The Raynauds is manageable, I've never had an ulcer or anything and my fingers are not hard. It's just so puzzling.

[myproblem]

Yes, limited Scleroderma has the best prognosis. Plaquenil is a good, long tested drug that slows autoimmune disease progression. It is also known in lupus patients (only) to decrease the risk of blood clots. I take it 2x a day for this reason. It has not done anything for my symptoms, but I am at high risk for clots based on my history, and test results. It improves symptoms in about 50% of patients. If it doesn't improve your symptoms within 3-4 months of taking it faithfully, and you don't have a clotting risk, I would suggest trying something else. Plaquenil is one of the cheapest and safest drugs for us, so if it works, stick with it.

[lusamo]

SCL-70 was negative. Nothing else was positive.  Rheumy looked at me and said "You don't have scleroderma,you just don't". Does the limited kind of scleroderma have the best prognosis>

[myproblem]

I was not aware that advertising was allowed on this forum. If you have advice to give, give it, but don't post a link to sell your product. That is in poor taste.

[Kevin Pho, MD]

Anti-centromere antibodies are associated with the limited form of scleroderma (systemic sclerosis).  This test is fairly specific (about 95 percent in studies), thus the likelihood that this is a false positive is low (i.e. a 5 percent chance that the test is positive, but you do not have the disease).

To further confirm the diagnosis, you can consider a test for the anti-topoisomerase I (Scl-70) antibody.  This is an even more specific test for scleroderma, and should be discussed with your rheumatologist.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b