Diffuse Systemic Scleroderma

My kidneys failed in 2009 & i nearly died, i was diagnosed with Diffuse Systemic Scleroderma 5 days after my kidneys failed. Over the past 2 & a half years i have had dialysis for 6 months, & have had vascular involvement & had to have an operation to unblock one of my major artery's, several mini strokes & now i have problems with my digestive system & my throat, i also have raynalds. Professor Denton from the London Royal Free Hospital in the united Kingdon has now told me that he can see the start of heart & lung involvement & my condition is spreading very fast, so he has now put me on a form of chemotherapy for 6 months to try and supress it. My question is, does anyone else have chemotherapy or a similar story to mine. also does anyone live in the United Kingdom. Sorry to bother you all but i sometimes feel that people don't understand because i don't no anyone with this awful condition, any comments would be appreciated.

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  • Sounds like you have been through a lot. I have ltd scleroderma with other probs, but i do understand how much more serious diffuse is. Please try this forum. Copy and paste it. It is much more specialised and the people who run it all have diffuse scleroderma and have had similar probs to yourself. Good luck

    sclero.org/forums/index.php...

  • Hi Keza. You have had to deal with alot. I have Raynauds and Scleroderma which has affected my lungs - lung fibrosis. In 2006, I had a 6 month course of Chemo (cyclophosphamide). This has stabilised the fibrosis and now I'm on a tablet form of chemo. I hope all goes well for you.

  • thank you inkedup i will take a look at that link & thank you sandram make's me feel a little better knowing i am not the only one having chemo.

  • Hi Keza. I also have scelroderma which has also affected my lungs, my digestive system and I have raynauds as well. I also see Dr Denton at the Royal Free. When my lungs fibrosis was diagnosed in 2005, I had cyclophosphamide (the form of Chemo) for 6 months as well and then I was placed on a tablet form which I still take even now. It has helped to stabilise my lung fibrosis and I am sure it wil do the same for you.

  • Hi Keza. Sending best wishes to you as you've had an awful time. I too have diffuse scleroderma, although it is early stage and we seem to of caught it really early. I was diagnosed about 18 months ago with scleroderma and a year ago with the diffuse subset. It's been a rollercoaster, made worse by feeling so alone until I found this forum - so may I say a big HELLO! :-)

    As yet I've not had any major complications (touch wood), so I am really lucky so far. My hands are cold and joints starting to contract (I sleep in splints which is helping no end). I can feel that my body is tighter than it should be, but my skin score has improved a lot since I started taking mycophenolate (immunosuppressant). They offered my the mycophenolate or the chemo, so I opted for the mycophenolate to start with. I seems to be suiting me so far. I currently have a small infection, so they've dosed me up with antibiotics - fingers crossed that will do the trick. I'm also on Ramipril for my kidneys, nifidepine and aspirin.

    If you ever need to chat or a rant do drop me a line x

  • Thank you Dimi.

    Roamer, i also was on mycophenolate but they stopped working thats why they tried the form of chemo.. But hi, it is good to see i am not the only one x

  • Hello Keza, I was diagnosed with scleroderma about 11 yrs. ago. It started off really bad, more than CREST but not diffuse. My Dr. put me on methotrexate(low dose chemo pills), and prednisone as well. I could tell in a few days it was starting to reduce some of the swelling. I stayed on the chemo pills for about 7 yrs. but they were making me more anemic so I went off them, but still take prednisone everyday. Nexium helps with acid reflux. Also after I went through menopause the decrease in hormones helped as well. I have crippled hands and red spots all over my face but I do o.k. I help you start to feel better!

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