Thursday, 5 December 2013
Can't believe that dropping 2.5mg pred can make much difference to how I feel, but am more tired than ever. Still very nauseous and retching mid morning despite the omeprazole.....guess that means its the azathioprine! Am still trying to get my head around changing it to another immunosupressant, can't say I'm keen, but guess it will have to be done. The question is, when? Before Christmas and risk being unwell during Christmas? Or in January and risk the planned return to work? Bollocks.......could really have done without this. Answers on a postcard/email/comment please!!
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Hi penny hope this finds you well and managing to cope a bit easier with the medication, have you reached your decision about the azathioprine? hopefully your feeling better and the choice won't have to be made!!!!!!!!!!!! It seems am not doing so well on the budesonide alt back up to 600 so it may be another stay in hospital for me if things don't improve in the next two weeks, take care x
ReplyDeleteHi! So sorry to hear things are not improving for you. Really hope you don't have to go back in, will keep everything crossed for you. I'm still not great on the azathioprine so will reluctantly change when I see them on Monday! aghhhhh!!!
ReplyDeleteHi Penny, I have been reading aboput your experience with AIH and just wanted to say that I couldn't tolerate Aza at more than 50mg as it made me retch and feel so sick. My consultant reduced it straight back down to 50 but I had to stay on Pred for another year. I came off Pred in Jan this year and have to say that my levels have been normal for nearly 2 years and I feel really quite good now, have plenty of energy but if I overdo it I have to give in and rest. your hair should start to regrow immediately and should also stop falling out. Mine has nearly recovered now and the length is growing again. I suggest Argan oil and a good leave-in conditioner. I know exactly how you feel but unfortunately it is a case of listening to your body as you will pay for it by feeling so lousy if you don't. Please have faith as you will get better but it is a slowish process and a case of pacing yourself until your levels have been normal for 6 months or so. This doesn't mean you can't live a normal life, you can,but to start with you will suffer fatigue so need to know your limits. I am so sorry that you are feeling so rotten but it really will get easier! I didn't ever think that I would feel well and normal again and it is a traumatic thing to experience. I remember being told not to underestimate it at the stare but now I am told by my consultant not to overestimate it, that is good advice! Maybe you could suggest to your consultant that you go down to 50mg of Aza and a small dose of Pred. The Pred will also help with the inflammation of your liver. I really would not have wanted to change to another drug at this stage either and the Aza now works a treat for me really. Hope this helps and please ask me any questions if you want to and hopefully I will be able to answer them! All the best. J
ReplyDeleteHi J
DeleteThanks for your support. I have already asked them to let me go back down to 50mg......they flatly refused saying I would risk a flare up! I will try the argan oil for my hair. had bloods done today so will see what they say Monday
Oh dear. That is tricky for you. I understand that they don't want to risk a flare,up butmifmtheyincrease the steroid dose slightly, that shouldn't happen. The Aza takes about 8 weeks to kick in anyway. I am very aware that if I had been able to tolerate 100mg of Aza, I would now be taking double the dose of a toxic drug that I actually needed to control my AIH. There is a very good article written by two experts on AIH. It is by Dr Michael Heneghan and Dr Gleeson. Google it and you should be able to download it. It is long but very informative. If you go armed with that on Monday it may help you get a better reaction from your Doctor. If you can't find it, I can send you a link by email. I hope you get on ok. Like you, I also took Omeprazole to stop the painful heartburn caused by the high dose of Pred. Once the Pred was down to about 20mg, I stopped the Omeprazole as I didn't think I needed it anymore and as I felt it was too much of a cocktail of drugs with the Aza etc. I was fine without it and haven't taken it since. Try and have a good weekend and don't worry too much. Not an easy time for you. J
DeleteI found the article link: http://www.bsg.org.uk/clinical-guidelines/liver/guidelines-for-the-management-of-autoimmune-hepatitis.html
DeleteI hope you find it useful. J x
Thanks I have downloaded and will read tonight!(after strictly of course!) x
Deleteok I've got some Argan oil.............now what do I do with it??! The bottle says to apply to tips of hair before washing........not sure that will help! Whats the best way to use it?
ReplyDelete