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Brian

New member with Scleroderma Morphea

3 posts in this topic

Hello everyone

I appear to have Scleroderma Morphea and realise it was developing a year ago but not having been 80 years old before, and well all my life, thought the changes were just due to age.

I have been on a crash course of Steroids but with little effect. I have now had 11 sessions of PUVA ( psoralen combined with ultraviolet A ) started with 17 seconds and today had 1min 40m sec.

Can't say it is having much effect but remain optimistic. Also using a steroid ointment.

Not many postings mention the discomfort that goes with it because I have to take Ibruprofen and Paracetamol to cope with the pain.

My hospital appear to be a little out of their depth and just trying anything that might help-that's probably unfair but people will know where I'm coming from.

I now have a whole lot more feeling for people with skin problems than I did previously.

Hope to bring good news in good time.

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Hi Brian,

 

Welcome to these forums!

 

I'm so sorry to hear that you have Morphea Scleroderma and that you're suffering so much pain and discomfort with it.

 

I can understand that your hospital feels a little out of their depth when dealing with a complex and unusual disease such as Scleroderma which is why we do advise our members to consult a Scleroderma specialist if possible. It should be possible for your general practitioner to refer you to one and I am fortunate to be a patient at The Royal Free Hospital, which is a centre of excellence for the treatment of Scleroderma.

 

I do hope that the discomfort and pain settle down for you and now that you've joined our community please do continue posting and let us know how you're faring.

 

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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Hello Brian

 

I have morphea and bullous morphea (blistering type of the disease) as well as systemic scleroderma. According to literature some morphea can burn itself our after 3-5 years even without treatment. Not my experience I have to say.

 

I haven't had pain from the morphea so can't help there but perhaps the links included in Jo's post will help you. I have plenty of pain from everything except the regular morphea which is of no help to you, sorry!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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