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About SimonW

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  1. Hi Stacy It's really difficult for anyone unless they've got scleroderma to understand how difficult and life changing it is. I got ill in April, spent 12 weeks in hospital before being diagnosed with scleroderma. I lost 4 stone, couldn't eat, couldn't walk far, got out of breath easily, was in pain constantly, couldn't get up of a chair. My fingers curled over and I got digital ulcers on my fingers. I had to give up work as a self employed builder. Sorry this isn't me feeling sorry for myself! Things can get better and will improve with treatment I'm sure. I have improved a lot with medication and am currently near the end of a six month treatment with cyclophosphamide which should stop things getting any worse. I just wanted to say things can improve over time. I've put some weight back on, can walk a lot further, I'm in a lot less pain and my muscle strength has improved. Even though I'm not back to my old self or at work that's my aim one day. We all try and stay positive, but it's hard with the uncertainty of how we will be affected over time and when simple everyday tasks become impossible. I'm sure you will receive the best treatment available being referred to a specialist in scleroderma. Good luck and best wishes Simon.
  2. Hi thanks for the replies,like you say I think it's just a matter of trying all treatments and hoping for the best! Digital ulcers seem to be improving slightly I'm taking coracten for those and hopefully the skin may improve.Thanks again and best wishes Simon
  3. Hi, Thanks for replies Amanda and Helen best wishes to you both! I'm going for my fourth cyclophosphamide infusion next week,for diffuse scleroderma, current medication is pain medication, Dapsone, Nifedipine, ferrous fumerate, omeprazole, prednisilone, alendronic acid, adcal D3, aspirin and parecetemol. My original post was asking if anybody had any improvement after treatment or over time? Would be great to hear of anybody who has. I understand everybody reacts differently to medication and there are lots of people worse off than me and I am being positive! Has anybody had improvement with the tight skin? Mine is particularly bad in my hands with my fingers curling over ,also any tips for digital ulcers ? Many thanks Simon
  4. Hi Jo, Thanks for the reply. That's great news the cyclophosphamide improved lung function. Mine is currently down to below 50%. So hopefully there will be an improvement. I'm currently being treated under a rheumatology consultant who is excellent and has been very helpful and explained everything to me. But I did check out the list of scleroderma experts and there's one nearby so I'm going to ask for a referral. Many thanks again.
  5. Hi all, Recently been diagnosed with scleroderma. On lots of medication and halfway through a six month course of cyclophosphamide once a month for six months given intravenously .Wondering if anyone else has had similar treatment and was there any improvement in symptoms? Look forward to your replies. Many thanks.
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