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dorothymay

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About dorothymay

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    Newbie

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  • Location
    Co. Durham
  1. I had pain in my wrist and xray found a fracture. A scan showed osteoporosis so I was put on Alendronic acid but couldn't swallow it due to the effects of the sclerodrma so am now having yearly infusions thanks to my rheumatologist.
  2. dorothymay

    Cyclophosphamide

    Thanks Ruby, I didn't expect much help for my lungs as my TLCO is 42 % already , but everything else is going downhill so quickly I am willing to try anything that will maintain or improve my quality of life and your reassurance has helped . Sorry Helen I had a senior moment there, I don' t know where Ruby came from.
  3. dorothymay

    Cyclophosphamide

    Thank you so much for your reply. I am so glad to know this. I have to have 3 infusions at 3 weekly intervals and 3 at 4 weekly intervals and a prednisolone infusion prior to each infusion of cyclophosphamide. I have to drink 2-3 litres of water each day (thanks for the tip of drinking plenty prior to the treatment) I have to collect antibiotics from my G.P and have an MRSA swab 2 weeks prior to treatment. It has taken a year out of our lives to get this far with input from a dozen or so different specialities. My lungs have the most damage and this is reflected by increased pulmonary artery pressure. I have lost over 2 stone in weight this year which is great for an excuse for shopping and improving my image but I find it hard work trying to take extra care of my skin and exercise to maintain strength and mobility. I am so tired because nothing works in the same way it used to do and I have to think of new methods of doing things, hence the excuse of popping along to buy new gadgets! Keep the advice coming please
  4. dorothymay

    Cyclophosphamide

    I am to be started on Cyclophosphamide infusions. I have all the literature but I know nobody else who has been having this. I will be given this between September and January. Will my life be on hold until then? Can I take holidays and carry on as usual or will it have aprofound effect.
  5. dorothymay

    Any scleroderma sufferers in North East England?

    Yes I live near Durham and have systemic Scleroderma but am newly diagnosed.
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