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lexidreamer

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About lexidreamer

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  1. New to site - generalised morphea

    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 as you have mentioned with yourself I usually vomit either coming or going but didn't really associate it with the sclero. Maybe it is? The blisters are on my fingertips and sometimes the tops of my toes. I did upload some photographs earlier in the thread. Or they are in the photo album on the site. They blister and itch like crazy. If there are a lot of them the fluid makes my finger feel numb. Then when they pop it's a clear sticky liquid and they heal and leave open like small craters in the skin and are very sore. They are only tiny about 1-2mm. I did research bullous morphea and I don't think it is that. It looks really painful!! Take care, Lexi
  2. New to site - generalised morphea

    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. New to site - generalised morphea

    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 Alex
  4. New to site - generalised morphea

    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. How to find and see a good consultant

    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. Just been diagnosed with Morphea.

    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 has given you. I have seen Marina Anderson at Aintree and I was referred to Dr Bhushan via Dr Herrick who is on the list; in my opinion Dr Goodfield is the best. Good luck with your appointment, Alex
  7. starting on hydroxychloroquine

    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 at it. Hope it works and stay positive :) Alex
  8. New to site - generalised morphea

    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 but apparently it will make me really sick. Has anyone had any experience with this drug with scleroderma? UVA1 was discussed Shelley but the only hospital near me that does this therepy is an hour away in the car and I don't drive :-) so getting there 3 times a week would be a pain, Thanks for your reply Alex
  9. New to site - generalised morphea

    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 are still slightly itchy but really sore. Sometimes they get infected because of the tablets I'm on. Any help is much appreciated! Thanks Alex
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