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Struggling with Morphea: Can anyone offer some hope?

Posted by hildeirene @hildeirene, Aug 11 2:56pm

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 | @hildeirene | Aug 14 12:49am
In reply to @altabiznet "@hildeirene Burning sensation may be a part of the disease itself due to peripheral nerve inflammation..." + (show)
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@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.

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@altabiznet Thanks:) I’m currently on 2000 mg pr day. Yes, I’ll have to wait for at least a couple of months.. Control at the hospital 5.10, but that’s a long wait if the side effects are due to the drugs..

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hildeirene | @hildeirene | 14 hours ago
In reply to @altabiznet "@hildeirene Burning sensation may be a part of the disease itself due to peripheral nerve inflammation..." + (show)
Profile picture for Alta Net @altabiznet

@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.

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@altabiznet Now they have lowered the dose, so on 1000 mg instead of 2000. And they’re talking about changing to Metotrexat. Can’t bend arms and legs at the moment, well, with difficulty..

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Alta Net | @altabiznet | 12 hours ago
In reply to @hildeirene "@altabiznet Now they have lowered the dose, so on 1000 mg instead of 2000. And they’re..." + (show)
Profile picture for hildeirene @hildeirene

@altabiznet Now they have lowered the dose, so on 1000 mg instead of 2000. And they’re talking about changing to Metotrexat. Can’t bend arms and legs at the moment, well, with difficulty..

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@hildeirene

This sounds like progression of scleroderma into systemic sclerosis. If you cannot bend your arms and legs, this is due to synovitis and possibly inflammatory arthritis associated with this disease. Methotrexate is appropriate treatment. It is approved for both rheumatoid arthritis and scleroderma. It is usually given with oral Folic Acid 1000mg/day. It may help as well. Starting trial dose for Methotrexate is usually 10-12.5 mg IM weekly. Then the dose is escalated to 25mg IM weekly, if tolerated. Alternatively, these doses can be given orally, but intramuscular injection has better bioavailability and no real nausea. However, fatigue with malaise and muscle aches for 2-3 days post injection, are expected. Some GI discomfort. Possible brain fog and memory issues due to suppression of folic acid synthesis in the body. Some symptoms may get better after 1 month on the drug. Keep posting your progress. Best of luck.

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