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