Search the Community

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