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lexidreamer

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About lexidreamer

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  1. Hi Amanda, Thanks for the advice! It is only an hour there and an hour back in the car. Unfortunately I don't drive, when I go to clinic my Dad takes me. But if I go 3 times a week I can hardly expect him to miss or be late for work 3 days out of 5. So I would get the train which is 3 hours there and 3 hours back. And I have university 3 out of five which means I would struggle to make it in. It is a pain but I agree it sounds better than the drugs I'm taking. I will have to discuss this with my dermatologist. It's funny you should say about the travel sickness. I am awful with travel!! Same
  2. Wow, I know I have gastrointestinal problems. They think I have slight reflux at the minute. I have also recently been diagnosed with OCD. But I didn't tell my dermatologist as I didn't think it was related, can it have effects that are mental illness? It's getting better but I didn't know it could cause other things like that. Thanks Alex
  3. Thank you Jo, I may have a chat with my dermatologist when I next see him as apart from some restriction of movement in my hands, as far as I know I am very lucky and have no internal involvement. I'm not sure if morphea can have internal involvement as different sites say different things. I know it can't turn into Ssc but can it have some internal involvement, and isn't that the same as SSc? It's all quite confusing. I have had morphea for 8 years and I still don't understand it :D haha. I suppose maybe my plaques are so widespread that they are worried it may progress. Thanks A
  4. Oh good, I was worried about hair loss too!! What effect did it have on your scleroderma? Also was you able to work when you were having it? I don't know how sick it will make me. They also said it may make me infertile, I'm not bothered about that at the minute but I might be in the future. Thanks for your knowledge. Alex
  5. As I have put in another thread, I have just been referred to Chapel Allerton hospital after seeing probably around 3 adult consultants and 3 or 4 paediatric ones when I was younger; Chapel Allerton has been the best so far. I may look into getting a referral to The Royal Free; it's a travel but it could be worth it.
  6. Hi Mrs Seddy, I have just joined too, I have generalised morphea; it covers everywhere except my face. I live in Lancashire but I come to Leeds for treatment. I am 20 years old. I agree with everyone it's the medication that will be the problem. I was told that if I ever wanted children I would have to stop all my meds then conceive and give birth then start all meds again, and you don't know how ill coming off your meds would make you. I know someone else with morphea though and she has had two healthy children. I see Dr Goodfield at Chapel Allerton in Leeds. He is on the list that Amanda h
  7. I have been on both of those medications. Not at the same time, with methotrexate I had that for two years tablets and self injection forms and eventually came off it because I was sick when I took it and it wasn't making a big enough difference to warrant being sick so much. I didn't have any side effects to hydroxychloroquine and was on that and MMF ( mycophenalate mofetil) combination which didn't work and I am now off both of them. Just because it didn't work for me doesn't mean it won't for you. They are at a loss with me at the minute because my body seems to be rejecting all meds thrown
  8. Thanks for the info, It's like a pit there is no new skin underneath, then it usually creates some sort of healing layer over it and drys out. Anyway at the minute my morphea is rife has been for several years now nothing seems to stop it, originally steroid IVs and MMF worked but for the past two years nothing seems to work. I have been on: Steroid IV (prednisolone) Depomedrone MMF Methotrexate (tablets and Injection) Etanercept (injection) Hydroxychloroquin PUVA And am currently on Cyclosporine and vitamin D tablets Cyclophosphamide has been discussed if these don't work either bu
  9. Hi I'm Alex and I have had generalised morphea for about 8 years now. It covers all of my body except my face, I must have over 30 lesions but they join together so most is a darker colour now. Just wondering about digital ulcers? I have been diagnosed with blistering eczema but I'm wondering if they are digital ulcers? I get hard skin on my fingertips, then a thin layer of skin completely peels off and leaves tender, shiny new skin. I also get clusters or sometimes one or two tiny blisters on my fingers, that are sore and itchy! Then they dry out and create small pits in my fingertips that a
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