Vasculitis UK
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Severe weight loss

I have severely compromised lungs due to sarcoidosis. Last year I lost a lot of weight (about 22 kilos), and considering I was only 62 kilo to start, I am severely anorexic. I have been trying to gain weight with high energy food, but I cannot get beyond 47 kilo.

I am on long term prednisone, nebulisers (Combivent, nebusol) and inhaled colomycin. Also azithomax three times a week.

Has anybody else managed to get their weight back?

PS in addition, I also suffer with brociactesis!

Best wishes

3 Replies

Hi Amrit

I haven't had this problem, mine was that I gained weight and although I lost of alot of it I never got back to my pre vasculitis weight.

I don't really know what to suggest other than that maybe you should speak to your GP or consultant about the possibility of seeing a dietician. They should be able to devise a plan for weight gain as well as for weight loss.

If you are anorexic then I think you should get some professional help or you may start to experience other medical problems.

Best wishes



Hi Amrit

this must be a worry. I have CSS which involves bronchiectasis and asthma. At present these are under control as I'm on Cell Cept and have had a lot of recent treatment. However, about 8 or 9 years ago I lost a lot of weight and wasn't eating very well. I put it down to the lung problems. I was referred to a Chest consultant who said my lungs have to work harder and so I burn off the calories very easily...I was doing postural drainage twice a day...which you may be doing?

I have to agree with PatriciaAnn and suggest you ask to see a Dietician. I saw a Nutritionist (privately) and it was helpful...but my appetite seemed to come back of its own accord! There may be foods which could help you gain weight.

I hope you soon see some results.



Thank you so much Pollie. Unfortunately, I too have bronchiectasis which developed after my lungs were damaged by Sarcoidosis. This has meant that I am on 24 hours oxygen since last November, which is a real bind! My saturation keeps dropping below 80% at times, so like you! I have to work hard at breathing and drainage.

I am on a very rich diet, including energy drinks, so hopefully over time my weight will get back to normal.

Best wishes, and keep well!



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