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ksaxo

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About ksaxo

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  1. Hello, I'm very happy to have found these forums, I never thought I would be able to find so many people who are going through the same things as I am. So far just reading through a few posts have made me feel a little better because I have had morphea untreated for 10 years with no major complications besides spreading. I'll start off with, I am a 20 year old woman, and had been diagnosed with Morphea at the age of 10, though it started around the age of 7 or 8. It began as small white spots on my upper back, and slowly began to become brown around the white patches. The brown discoloration (where there is shininess and you can see veins very clearly but is not hard or tight) has now spread to most all of my body (I think that's Generalized Morphea?), with a few white patches (which haven't been tight until now and still is only a couple white spots, located on my arms and legs, the hardened patches on my back have completely gone). To clarify, my skin is not tight or painful, it feels like normal skin in most places, it is just discolored and shiny and sometimes feels dry. At 17 I had my first child, and my second at 19, with regular checkups and bloodwork with nothing wrong. But now I have become very worried about myself for my children's sake since there is new spreading. When I was younger the doctors and dermatologists had no idea what to do for me. They started me on some creams which didn't do anything at all but sting my skin...so they told me there was nothing else I could do but go home and hope the disease wouldn't progress. From age 12 to 18 I didn't see a doctor about my skin, there were no specialist available in my area I could see, and I certainly could not afford to travel to find one. Though I knew the disease was getting worse. I was always told everything would be okay and not to worry so much. Its not the covering up my skin part that is difficult, but thinking about what could happen to me in the future scares me so much. Anyway I had finally found a dermatologist last year and was so happy to finally be able to get this under control. Upon my visit, the doctor didn't even ask to look at my skin, he basically handed me a prescription for Methotrexate and bloodwork and sent me out the door (he also said something about maybe starting phototherapy). Being very uncomfortable with that situation I started searching online for "Methotrexate" and was very upset and scared by what I read about the drug. I was never warned about side effects, not being allowed to drink alcohol, or really what the medication did, so once I read it online I decided I was not going to take it, and didn't return to that doctor. I was so afraid after that I didn't want to see any doctor, but recently the hard, dry white spots have began showing up in a new place, this time it trails down my forearm where the brownish discoloration starts. I guess I am just looking for some advice or opinions from people who understand the disease. I have made an appointment with my family doctor and classified it as an "emergency" but I still have to wait till NEXT Friday to see him, and he has to refer me back to the dermatologist which may take longer. I do have a few other specific questions: 1) If I were to go to a hospital if it continues to spread quickly, could they help? 2) Is Methotrexate something that would be beneficial to me without tightness in my skin? 3) If I start it then decide to stop may my skin get worse? 4) Is this a drug I will have to take for the rest of my life to keep improvements? 5) Also is methotrexate the only medication to prevent spreading? This has been the only drug I had ever been prescribed, so I am not sure. 6) Also is this disease able to be passed onto my children? I've been very upset and terrified thinking that my daughter might have to go through what I did. Again the spots are covering most of my body (besides back of legs and some places on arms neck and face) but are not tight, not painful and are not causing problems to my mobility. Sorry this has been so long, I have just been so upset and afraid over the last few days and have nobody to talk to about it. Thank you in advance to anybody who reads this and may respond, just need some real, clear answers which I have never been given. KSA
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