Unfortunately, I've had Aza stopped after only 10 days - ended up at hospital on Saturday (raised temp, vomiting, pain everywhere, bladdy bla). Dr treated me for infection (some sign of urine infection on dipstick test), but also gastritis/oesophagitis due to being on pred for months. I kind of agree with dx, but I so wanted the Aza to work as very keen to get prednisolone dose down (still on 20mgs per day). Dr did say they may restart Aza in a few weeks, but I feel so much better not on it, after only a day, I do wonder if it disagreed with me more 'systemically'. I am really dismayed by all this, and a tad scared as to how they can treat me if I can't tolerate Aza (to stop progression of 'AI cholangiopathy'). Don't worry, as I told the frowning nurse on Sat night, nobody's heard of it!! I've been started on Ranitidine too, for my stomach, so that might help in longer term.
Anyway, just curious really. I do have to see GP for a review tomorrow, so more info then, I hope, but now I'm home I have all these questions. Still feeling quite ropey but so glad to be home and on oral meds. The 10 days on Aza was awful, with nausea mounting by the day. But I'm left with all this prednislone, which I don't like either .....
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witchiegirl
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My daughter used to take Aza for her AIH but it affected her white cell count.She is now trying mycophenlare as an alternative. She also has omeprazole due to taking Pred to help combat stomach acid.
Think there are other alternative too, hope this helps.
I also had to stop taking Azathioprine after only a short period and that was because it affected blood cells. Since then I have been on Mycophenolate Mofetil ( 2 grms) daily and that seems to work fine. Some people do have stomach upsets but I understand many UK doctors advise this can be eliminated or reduced if the tablets are taken with or immediately after food despite what the patient information leaflet says. I have usually taken with food and no stomach problems thus far.
Brilliant! That's the drug I was thinking of but couldn't recall name. Off to see what Dr Google has to say about it! I had bloods done on Friday and they/white cell count 'weren't too bad' apparently, so it's more the stomach irritation and infection (which will be the same whatever immunosuppressant I am on). Already in a few months I've had shingles and two 'atypical' long bouts of bacterial infection, on steroids, when normally I am quite healthy. Yes, really! It's all a bit of a drag. I just want to feel well and get on with things.
There's also Mercaptopurine which people on the AIH forum call 6MP. Also known as Purinethol. Seems many of them take this if they get gastric problems with the aza.
I have been on azathioprine for just over two years for AIH. I have always taken mine at bedtime and have been lucky to have no side effects. If your consultant suggests taking it again try at bedtime it might then work for you. Good luck with sorting your mess out.
I have taken prednisolone since diagnosis in 1999 with the dose for the majority of that time being 15-20mg. I have finally come down to 12.5mg! I was first put on azathioprine too but reacted badly to that, then mycophenolate and reacted to that. I am now taking prograf/ advagraf also known as tacrolimus. The prograf version is one that is taken twice daily and I believe may be more effective than the advagraf which is a slow releasing one taken once a day. Doses are adjusted to make sure that whichever one you take, you will be taking the right amount and it will be beneficial. Added to the standard AIH blood tests, I also have a 'tacrolimus level' taken to make sure that the dose is right. Hope this helps. Also, if you do not have cirrhosis, an alternative to prednisolone could be budesonide though this may be mainly for AIH...
Thanks for further responses. It's really for the AIH part of my condition this treatment is being used, I think, so all this AIH stuff relevant to me. Still haven't looked up drugs as our 'interweb' playing silly buggers, so I'll try again today. It's good to see there are a few option still.
Well, at GP's suggestion, I gave Aza another try end of week there, had another bad reaction, and that's it stopped now. GPs aren't convinced it is AZA doing the bother; I am. I was there! Seeing my usual GP this week, and they are getting in touch with specialist about alternatives. A bit fed up ....
Hi witchiegirl. Did you take your Aza with food. I have 100mg and always take it straight after food and have no problem. I know that others on here have had a problem with it when taking it on an empty stomach. Regards Alf
This is old news, was 6 yrs ago, and I’ve happily been on an alternative in that time. Some people really are unable to take aza even with food. I’m one of them!
Thanks Witchie. I realized as soon as I'd posted. Put it down to a senior moment Glad I've not had the problems that a lot have with Aza. I'm supposed to be weaned off them in the next six months all being well. All the best to you. Alf
I do hope the weaning off goes well. In the last few weeks Ive been found to have low potassium - probably due to immunosuppressant though I’m on other meds too. I’m not too worried except my condition (I’m one of those with a rare variant, high risk of relapse) means I should remain on immunosuppressant for always, so I hope I won’t have to stop. The whole thing 6 yrs ago was ghastly.
I suppose the lower they can manage to get your immunosuppressants the better. It must be a fine balancing act to get meds as low as possible but keeping all of the body happy at the same time. The plan with my Aza is for it to be cut by 50% in three weeks time and then hopefully stopped completely 3 months after that. That will leave me on 3mg Adoport (Tac) daily. I hope they can do something about your potassium levels without having to put you through altering your present meds. Alf
How interesting that you know more about your med plan than me given we had TP at same time. As far as I am aware I’m on Aza forever and Tac for ever (but that dosage is still being fiddled with a bit). I’m under QEHB (well not literally - well not yet 😁)
When I go to clinic, I see most of the transplant team. They discuss me between themselves while I'm there and then discuss their decisions with me after each conflab. so when I leave I know everything about how I'm doing and what they have planned. It's first class. I don't think that I would fare better if I were to be having private treatment.
It's maybe because I go to a clinic that is called a combined clinic because it involves the hospital that dealt with me through chemo etc and up to assessment and also my transplant team. There are about a dozen people in a fairly small room. They are also seeing patients that are being put forward for and hoping for work up and assessment and so it makes sense to have the team there. I'm just very lucky that they see me at the same time.
Hi, my name is Fayruze and i so need help from you guys. My dad was diagnosed with ANCA/ vasculitis that attacked his kidney and lungs with the result he developed fibrosis of the lungs. He was on 6 treatments of cyclophosphamide and now he has been placed on azathioprine . The cyclo stabilized the kidneys but the lungs remained scarred. He has had such a bad reaction to the azathioprine, fever, bladder infection nausea and loss of appetite. He is 73 years old and we stopped the aza for the pass 7 days . The doctors are saying that we should leave the aza since he felt more healthier and could eat and have normal body functions including the ability and strength to shower himself. Due to the lock down i have to take care of him and i had the assistance of a day caregiver until the lockdown here in South Africa. My question is , my dad is a fighter and he is not the type to give up. I am afraid that the vasculitis will return if he stays of the drug. Despite three doctors advice to let him enjoy quality of life i see him fighting daily and feel that we should re start AZA. Can anyone assist by letting me know if there is an alternative to AZA.
I must address firstly that I can't help with your query as whilst no specialist we can only but relay our own conditions, mine being cirrhosis of the liver.
Secondly may I just point out that the post is 7yrs old and last post was 8 months ago. Witchie has not posted recently.
Others having similar issues can assist & be online in due course.
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This is old news, was 6 yrs ago, and I’ve happily been on an alternative in that time. Some people really are unable to take aza even with food. I’m one of them!
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