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abarnes

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About abarnes

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  1. abarnes

    Treatment of Interstitial Lung Disease

    Update on my wife's condition. Since my last post (about a year ago) things have continued to improve. Her skin is back to normal, lung function has improved, digestion is stable and weight maintained. She needs to be very careful about diet and sleep posture is also very important, but things are good. Steroid dose is gradually being reduced, currently 8mg daily. Azathioprine also being maintained. So, thanks to all the medics, and I hope that her experience will encourage those of you that are recently diagnosed and feeling a bit low.
  2. abarnes

    Treatment of Interstitial Lung Disease

    Hi Sandy Ann is under the care of: Rheumatology - Dr Rashid Luqmani at the Nuffield Lung - Initially Dr Peter Benson (now retired) then Dr Rachel Hoyles at the Churchill (she is due back from maternity leave shortly) Gastroenterology - Dr Tony Ellis at the Horton (which is in Banbury) We have the highest regard for all of them and consider ourselves fortunate to live in the 'catchment' area. (I know its not necessarily a geographic thing, but general practitioner referrals tend to be so). They also communicate with each other and our general practitioner about the case. Thanks to all who sent their good wishes - much appreciated. Andrew
  3. abarnes

    Treatment of Interstitial Lung Disease

    An update on my wife's condition. Late last year we agreed to a course of 6 IV Cyclophosphamide treatments and Prednisolone (steroids) as well. All was going well until IV number 5, to which there was a bad reaction and which resulted in Ann spending 6 days in hospital being re-hydrated and being got back onto solids. She kept taking the steroids but no immunosuppressants while weight came back etc, then started on Azathioprine about 3 months ago. At present things are good. The steroid dose is being reduced (now down to 10mg/day) energy is coming back, weight being maintained, lung function is stable and no further gut complications. The skin condition has improved markedly as well. So, many thanks to our general practitioner, and the Churchill, Nuffield and Horton Hospitals.
  4. abarnes

    Lung Function Tests

    Hi Joelf You were kind enough to reply to my post in (August?) concerning my wife, who had just been recommended the course of treatment that you are having. I am delighted that you are having such a good reaction, and it will also give great encouragement to my wife, who has just had her first IV. Well done to the Brompton and to you! Regards & best wishes Andrew
  5. This is a copy of a post to the UK forum, which resulted in some good posts from some very nice people. I am now posting it on the International site, in the hope that some more information may come to light. My wife has had diffuse scleroderma for about 15 months, with an associated Interstitial Lung Disease (UIP). She also has the usual digestive tract problems associated with scleroderma, but these seem to be being managed quite well. The chest consultant is recommending a course of treatment involving low-dose steroids and immunosuppressants (Prednisolone, CYC then AZA). The treatment has been the subject of some large scale studies in the UK and USA. Can anyone share their experience of this treatment combination? Thanks in advance Andrew
  6. My wife has had diffuse scleroderma for about 15 months, with an associated Interstitial Lung Disease (UIP). She also has the usual digestive tract problems associated with scleroderma, but these seem to be being managed quite well. The chest consultant is recommending a course of treatment involving low-dose steroid (CYC then AZA) and immunosuppressant (Prednisolone). Can anyone share their experience of this treatment combination?
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