Struggling with Morphea: Can anyone offer some hope?

@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..

Hi @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?

@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:)

@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!

@becsbuddy Thanks:) You took it for Morphea, or?

@hildeirene
Burning sensation may be a part of the disease itself due to peripheral nerve inflammation associated with scleroderma, but it can be due to the drug. The side effects at lower doses under 1000 mg/day should be tolerable, but some people are getting tingling, GI reflux, and diarrhea. If you have GI distress with bleeding, then talk to your doctor. Still, the drug may be helpful with improving Morphea. To see the results may take 3-4 months.

@hildeirene I took cellcept for Clippers (chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids) also called lesions on the brain. The disease matters less than the treatment. I was very hopeful about the treatment so cellcept did a great job! Cellcept is rather new-ish and is being used for many diseases that call for the immune system to to be suppressed.

@JustinMcClanahan Thank you Justin!

Hi @hildeirene! I'm so sorry to read about your discomfort and despair. The long wait for meds to take effect is very difficult. My localized Morphea appeared on my left upper body in high school. The visible areas were sensitive to touch. A biopsy confirmed the diagnosis, but I wasn't prescribed meds. It spread for a time, and was considered to be dormant by my late 20s. Recently I'm wondering if it's become active again, but it's difficult to tell as my skin has changed a bit since my Lupus/MCTD symptoms began in October 2025. I too am currently waiting for my Benlysta prescription to take effect - I'm in week 13 of taking the injections, and I'm hearing it can take 6 months to reach full efficacy. I'll echo others here and say therapy, and journaling my symptoms (mostly joint swelling and pain) and my feelings, has been very helpful since my diagnosis in January. The support and insights shared here are also helpful - it's good to know you're not alone. Best wishes to you, keep us posted!