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Hello,

 

I was diagnosed with localized morphea in 2014.  I was initially diagnosed by a dermatologist, and given a topical steroid cream.  She did not seem the least bit concerned, not taking any photos or scheduling follow up appointments.  Knowing nothing about the disease, I simply mirrored the same low-level of concern.  Two years passed and my condition worsened.  Lesions spread all down my thigh, my calve, and wrapping around to the backside of my leg.  Growing concerned, I decided to see a dermatology specialist in Philadelphia.  I told her about the progression, showing pictures I documented on my own.  I also explained I was having extreme muscle spasms in my leg in which I have the lesions.  My doctor said there is no link between the two.  She prescribed me plaquenil, to which we learned after 3 months of taking the drug, my body was not responding.  At that point we decided to try methotrexate.  I had a hard time with the drug, and requested to be taken off of it my next visit.

 

I work in the pharmaceutical industry, so I completely understand the necessity for pharmaceuticals.  When I asked to be taken off of the drug, my doctor was flabbergasted.  She explained that we finally found something that worked -- why would I want to be taken off and back track?  My concern is that we are not getting to the root of the problem.  I don't want the lesions to simply stop spreading, I want to understand how it's happening.  Furthermore, I am very familiar with methotrexate from working in the pharmaceutical industry, and the aggressive nature of the drug that has potential to cause liver damage.

 

I am 25 and concerned.  My leg spasms are at its worst, at some points so aggressive that they are awaking me from deep sleep.  I feel alienated by my doctor.  I have thrown around the idea of seeing a younger rheumatologist that may be more open to exploring other treatments.

 

Additionally, I am interested in participating in clinical trials.  Does anyone know how I would go about that?

 

Thank you for your support and knowledge on this subject.

Kara

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Hi Kara,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with morphea scleroderma since 2014 and are experiencing unpleasant symptoms with it.

 

Morphea affects the skin and sometimes underlying muscles and joints, which can cause disability, but it is not life threatening. A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non-skin symptom, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non-skin symptoms and none of the people in the study developed systemic scleroderma during follow up.

 

Morphea can burn itself out after 3 to 5 years, even without treatment. There are various Treatments for Morphea. The current recommended first line treatment, in most cases, is UVA1 Phototherapy. I can understand your reluctance to take a strong medication such as methotrexate (I have to take steroids and an immunosuppressant and I wasn't particularly ecstatic when I was told that I would be having to take those) however, when faced with the choice of being extremely ill or even dying from my lung involvement, I found that concentrated my mind wonderfully and I decided that taking medication was the lesser of the two evils. 

 

We do recommend that our members consult a listed scleroderma expert/dermatologist, in order to obtain the best advice and treatment for this complex disease. A scleroderma specialist would also possibly be able to advise you about participating in clinical trials.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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