Just wondering if anyone has tried going down the alternative route, supplements, change of lifestyle, different foods.......have been on steroids for AIH, can honestly say the experience was dreadful, depression, suicidal thoughts. consultant stopped steroids and now I have azathioprine......so scared to take it after reading all the side effects.......
Just wondering if there is another path, obviously still seeing docs for blood tests , any one got any experience of this ?
Many thanks
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CastorOyl
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Whilst I totally understand how horrendous the side effects of the medication for Auto-Immune Hepatitis can be (there are alternatives to prednisolone & aza which some people on the AIH forum have found to have fewer problems with) it is a big risk to go without the recognised, tried and tested & medically approved treatments. I'd also be cautious of anyone's 'you'll be fine on these alternative herbs, supplements and such like' stories.
At the end of the day it is your life BUT as a cautionary tale I have a wee hubby here who has late stage chronic cirrhosis because his AIH was never ever seen or treated by medics and we never even knew he was sustaining liver damage until it was too advanced and too late for treatment. He remains on prednisolone 5mg but has never moved onto an immune suppressant as his AIH has been deemed to be burned out - he's now on the watch and wait for possibly needing liver transplant (he was listed for 10 months previously - delisted two years ago today).
If you are not already a member, AIH Support has a fabulous active Facebook page at:- facebook.com/groups/AIHorgU... where questions such as yours are regularly asked and answered. Well worth joining for mutual support from over 1000 other AIH patients and carers.
Thank you Katie, so sorry about your husbands condition.....I've had AIH undiagnosed for at least two years, got diagnosis at Christmas, quite an emotional rollercoaster.....will check out the Facebook page, thank you xxxxx
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