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About Sunnysarah

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  1. Hi Thank you for your replies Judy and Jo, the links have been helpful thanks if somewhat heavy going; but have got the gist; bottom line really is we are how we are and can't change things. I think really the most important thing is getting to know and recognise good days and bad days and in my case I wonder whether I should slow down sometimes.I carry on absolutely as normal, full-time work, housework, two boys 12 & 14, hubby self-employed - so his books etc etc ... am I dramatising or do you ever feel the lung damage makes you feel a bit tired sometimes? My FEV1/FVC are 55.8% and 58.9%
  2. Hi all, hope you are all doing ok :) Just to update, I went to the Brompton couple of weeks ago had a lung function and saw specialist. My lung function has got better so that is really good news:) and my breathing is better than when I first posted but not as good as it feels funnily enough considering the lung function results. Anyway I am now on 1g mycophenolate and about to come off 5mg steroid. Specialist said worsening SOB probably interim between chemotherapy and mycophenolate. Will see how I get on without steroids, my next appointment is in January. I must say though now working
  3. Hi Jo, no probs....I don't think anyone would want to endure listening to me singing my heart out lol... Keep that to myself me thinks..:)... Am currently looking for a local yoga and or pilates class...like the idea of the whole ethos of yoga etc...just have to force myself to get into the swing of it though...bit of a shut the doors,close he curtains and snuggle in front of fire after work in the autumn/winter:) Best wishes Sarah
  4. Just to update anyone who may be interested; I saw local respiratory physio today, she has no knowledge of scleroderma and ILD but suggested that I practice breathing exercises from the duodenum, which I have never done as will help when I get extra breathless and helps 'keep the lower part of the lung clear from built up moisture etc'. I don't have any problems with this but it all sounds like sensible advice. I suggested Pilates/yoga to help and she thought that would be a good idea to help with the breathing and core muscles.....may help with my stooping. I was a little disappointed that
  5. Hi Amanda, yes, I can't be worrying about what might happen...too much to focus on now, in a good way. :) Thanks for the offer of meeting, I will bear in mind. Best wishes Sarah
  6. Hi J, afraid I am a female but just wanted to offer a little reassurance. All is not bad with this disease I have limited sclero with some hypomotility in oesophagus and am taking domperidone which definitely helps personally I always look on the bright side and can honestly say this disease, including lung disease, has never got me down. May have to take lots of tablets and make a few lifestyle adjustments but still have a very full and happy life. I know it may sound easy for me to say but try not to worry too much. Each case is different and try not to assume you have or will have the worse
  7. Hi Jo, thanks for the reply...mmm never been one for keeping fit...apart from walking the dog. :) But any incline or steps are pretty tiring and so over time muscle has declined. I have an appointment with respiratory physio onThursday to get the low down from a physiological point of view; just wondered what others had found or do to help with it. I'll post the outcome...may be useful. :) Hopefully the drugs will kick in soon and only a blip. I felt like I'd been given my youth back for a couple of months. Thanks again and I will check out the leaflets. Cheers Sarah
  8. Hi, Just to let you know I had chemo December to June and worked through. I had it at end of week. And I agree, the worst symptoms were actually my last treatment. It was just like a chronic hangover, although each one varied in after effects. But nothing too unbearable. Took the train up and home on my own from Kent to London. So would suggest things may not be as bad as maybe you're expecting. :) Sarah
  9. Hi all, I have limited sclero with ILD, finished 6 months of chemo in June and started predisolone/mycophenolate about 6 weeks ago. I began to have more energy and less shortness of breath about 2 months into chemo and until a couple of weeks ago felt like I had a new lease on life...unfortunately I now feel almost like I was before chemo :( ... Is this usual before mmf kicks in?.. Also I have lost so much muscle and wonder does anyone have any tips of the best exercises or any other advice on which muscles to target I'm starting to walk with a stoop lol ...only 47. Apart from that all
  10. Hi Chockers, I have limited sclero with interstitial lung disease (ILD). I've had acid reflux for years. It was my first symptom apart from Raynaud's. Anyway following recent endoscopy check-up my consultant notice that my oesophagus is scarred and so the walls of it and muscles don't move food own promptly as it should. I'm now on domperidone, which really helps. Maybe you should ask for a check-up with your gastroenterologist and have it checked out? Hope this is of help. Sarah
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