ChrisM28

Generalised morphea UVA1 Phototherapy

2 posts in this topic

Hi All, I 'm a 65 year old woman who has recently been diagnosed with generalised morphea. It's on my trunk, arms, back of knees and I'm fed up!! Was treated for eczema for 4 months before asking for a referral. Had my first test dose of methotrexate last night (5mg) now have a thumping headache! I'm having steroid infusions on 3 consecutive days next week. Anyone out there with similar who can offer me some hope that there's a light at the end of the tunnel? And talking of light wondering if anyone has experience of UVA1 phototherapy?

 

All help gratefully received.

Chris

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Hi Chris,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with morphea; unfortunately your tale of being treated erroneously for eczema is all too familiar. As morphea scleroderma is so uncommon, it's very often the last thing your dermatologist considers, which is why we do recommend that our members consult a listed scleroderma expert, if at all possible.

 

I've never taken methotrexate, so can't advise you from my own experience, but I understand from some of our other members that headaches can be a side effect of the medication, although it's possible that they do subside after having taken it for a while. I can however, give you personal experience of steroids, having taken them for the last eight years. They are certainly an effective drug, but not without unpleasant side effects (most of which I've experienced! :sad: ) and they can cause problems when given to scleroderma patients, Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma.

 

UVA1 phototherapy is now the recommended first-line treatment for morphea and I've included a link to our medical page to give you some more information about this treatment. Again, unfortunately (or fortunately, depending on your point of view) I have no personal experience of UVA1 treatment, but some of our members have had this treatment successfully.

 

To give you a little encouragement, morphea can burn itself out after 3 to 5 years, even without treatment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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