AboutAmelia Yaussy Expertise I can answer questions about systemic scleroderma and live and internet resources to help you cope with this disease. I have personal experince with scleroderma, osteoarthritis, fibromyalgia, and Sjogren's Syndrome.
Experience I am a systemic scleroderma patient (12 years) and have been active in support online for nearly the same amount of time. I proposed the Usenet newsgroup alt.support.scleroderma and own the website ihavescleroderma.com.
Organizations I am a board member and volunteer for the Scleroderma Foundation, Ohio Chapter.
Publications Arthritis Today, Sept 1997, "A guide to the internet"
Education/Credentials International Webmasters Association, Web Technologies Certification
Awards and Honors Volunteer of the Year, Scleroderma Foundation, 2004; Advocacy Appreciation Award, Scleroderma Foundation, 2005
Question Hi!
I have been diagnosed with systematic limited scleroderma almost 8 years ago. Now, I'm 24. Since then, I have only the following symptoms: Reynaud phenomenon, tough muscles in my hands and fingers, no pain at all, no problems with the skin, a little bit changed features (thin lips, nose), and a heartburn. I was always asthenic. I have high ANA factor, however Anti-centromer antibodies and anti Scl-70 are normal.
I was never taking any serious medicines, because I feel good. Even Reynauds is improving. I have annual checkups of internal organs, and no major involvement was found. However, recently I have checked Creatine Kinase level (general, without checking any fractions), and it was 390 u/l (normal 170). ALT and AST levels were ok. My doctor advised me to take Metipred (hormones) (12 mg), until my Creatine Kinase level stabilizes. He thinks that it is high because of muscles fibrosis (myopatia). However, I don't feel any weakness at all and I feel really good. I always thought that Metipred should be taken by the patients with severe forms of scleroderma. I just wanted to ask for your opinion, should I really take Metipred now? Is CK level high because of fibrosis, or are there any other possible reasons?
And also, I'm having a depression because my doctor refuses to give me any prognosis of my disease. I know that it is serious disease, but I'm wondering whether I have a chance to live normal life, enough to be an old woman. Is there any chance that there will be no serious involvement of internal organs?
Thank you in advance!
Answer Actually, depression is part of autoimmune disease, and not just because we're sad to have the disease. It's becoming more and more recognized as a symptom and proper treatment for it is increasing. Talk to your doctor about it. Although it's frustrating not to have a prognosis, maybe it can be a help to know that most of us don't have one. Work on dealing with what you have right now and not anticipating what may come in the future.
Rest assured that it's possible to be an old woman with scleroderma. I've had it for 14 years and my aunt has had it for almost 50. It may not be the life you dreamed about, but you have the power to make the most of what you have.
Your CK level could be high due to muscle inflammation and your doctor may be trying to reduce it before it causes symptoms. Rarely, scleroderma patients can get polymyositis, a muscle inflammation that affects the strength in shoulders and hips, making getting around very difficult. Prednisone is the medication used for this. If you're not completely comfortable with taking it, see your doctor and ask about it. Although it's been used in high doses in scleroderma before and caused other problems, many using it now stay with a low dose that is unlikely to cause complications or major side-effects.
