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Struggling with Morphea: Can anyone offer some hope?
I have been diagnosed with generalized Morphea, and I’m struggling! It’s difficult when you’ve no one to talk to. The skin is soo bad, with several soars, painful and itchy, and the tightening of the skin on legs and arms… the whole thing is just soo uncomfortable. I’m currently on Dermovat and Cellcept (nearly 5 weeks), and I wonder, is there any hope? My body is burning up, is it the medicine or the disease? I believe I’m the only one with this disease in Norway.. Is there anyone out there who could advise me on how to cope?
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@hildeirene I am so sorry that you’ve developed this autoimmune condition. This information from The Mayo Clinic should help you understand the basics of the disease. Several creams and medications are
https://www.mayoclinic.org/diseases-conditions/morphea/symptoms-causes/syc-20375283
mentioned that you could discuss with your doctor. I was also diagnosed with an autoimmune disease that left lesions on my brain. I was stunned and cried all the time. But I found a therapist who helped me. I might also tell you that finding a therapist to talk to could help you immensely. Look for a therapist who works with those who have a chronic disease. If you have any questions, write to us again
@becsbuddy
Thank you, I most definitely need a therapist, but I would also like to get in touch with people who have this particular disease, since I wonder about medication, Cellcept in particular, the burning sensation, the side effects and is there hope of getting better using this medicine? I understand that few people have generalized Morphea, but there must be someone out there? PS! I’m a nervous person, often thinking the absolute worst..
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1 ReactionHi @hildeirene, I'd like to invite @anakr, @sarahintexas, @bunnyhopper18, and @becks72 to this conversation about morphea. You may have come across their posts in the Help with Morphea treatment discussion (https://connect.mayoclinic.org/discussion/help-with-morphea-treatment/).
@hildeirene, you mentioned you have been prescribed a few medications by your provider in Norway - did they give any indication on what to expect with these treatments (timeline, recovery, side effects?) As @becsbuddy mentioned a therapist, are you finding any ways to take your mind off your diagnosis to help ease anxiety?
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4 Reactions@JustinMcClanahan
Hi, and thanks for responding:) The doctors at the hospital said I had to be patient, it’ll take at least 3-4 months before any improvement. Maybe even 6 months! It’s just that I feel I’m getting worse every day… hence the despair.. They haven’t answered my questions about side effects, just saying it might be the disease itself . So I don’t really know..Can I trust the medicine? How do I cope? I’m trying to keep myself occupied, but not always easy.. Thanks for the link to the discussions:)
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1 Reaction@hildeirene Hi, again. I took Cell Cept for approximately 2 years. I didn’t have any problems until almost 2 years had gone by. Then I developed diarrhea which I found out was due to another cause altogether. Rather than keeping me on cellcept, the doctor changed me to another medication, Myfortic. Both medications did an excellent job ! I don’t remember any bad side effects.
I know it’s hard to relax but just think about the hundreds of thousands of people in the world who take these medications without problems. And you can, too!