Afternoon

[Alley27]

Good afternoon, could I please as anyone taking Azathioprine how long it took your bodies to get used to this medication, what your starting dose was both if you were taking steroids and if you were not the best time of day to take Azathioprine, with food, other meds or otherwise and any side effects. I am asking because consultant put me on Azathioprine which I started yesterday and the nausea and fatigue have been debilitating. Thanks x

[gertrudestein]

Many people suffer nausea when they first start on Aza but it seems to settle down after a week or two. I was fine for the first few weeks but then the nausea and fatigue started and I wasn't sure if it was the illness (AIH), the steroids or the Aza.

However, I experimented by not taking the Aza one day and had a really good day. We were going on holiday and I didn't want to spoil it by throwing up every morning. Plus I couldn't see the benefit of any of the meds if I took them after breakfast (as usual) only to throw them up a couple of hours later. (I tried the wheeze of taking the Aza last thing at night so I could sleep through the nausea. Result - I had to get up in the night to be sick.)

My GP agreed and cautiously recommended I stopped the Aza but kept a close eye on the monthly blood tests. All went well until my 6 monthly check up with the hospital consultant. He was very alarmed (cross, actually) to hear I no longer took Aza and immediately prescribed a different brand to see if that would help. Well, I have never been so sick in my life! Throwing up for 24 hours. So I stopped again.

I suggested to my GP that I try mycophenolate instead which seems to work for those who can't tolerate Aza but as my bloods were all normal and the steroids were gradually coming down (I am now on 2mg a day) he didn't think it was necessary.

So my advice - don't do anything without consulting your doctor but if it doesn't settle down, ask to try Mycophenolate instead.

[Alley27 in reply to gertrudestein]

Hi thank you for your reply. I took 50 mg aza this morning just about 20 minutes ago. My head feels woozy but no nausea yet. As for mycophenolate, tried that and absolutely couldn't function on them.

I was diagnosed in 2011 with AIH and PBC overlap. The first meds were prednisolone followed by Azathioprine. I caught a virus from my sons mate who stayed with us for a week and my gp said to stop aza to take antibiotics. He 6hen decided that I'd had a reaction to Azathioprine so it was stopped. They then put me on mercaptopurin, which I took for 8 years and last year, they decided to switch me to mycophenolate because I had had 2 flares that merited hospital stays plus jaundice. What they never took onto consideration was my job, which was close protection security and never home, travelling all the time, staying on camp sites or in hostels or hotels with sometimes inadequate facilities....

I am retired now because of my health so why they don't put me back on mercaptopurin troubles me. With this illness, quality of life matters and if what medication you are taking depleats that quality of life, you are better off not taking it at all. I am on budesonide which the consultant put back up to 6 mg.

We will see what happens. I have left a message with consultant secretary and explained what I have done and for him to ring me asap.

Take care.

[exy21 in reply to Alley27]

I take Aza with my main meal inbetween the food. I do feel nauseous on/off some days but never sick. Think it's the Aih/pbc more than aza. When I have flares I'm put on prednisone for short periods as don't react to it well.

Start dose was 100mg but down to 50mg. Have been on 75mg before. It's done by your body weight.

[Alley27 in reply to exy21]

The 50mg feels ok so far...perhaps I need to stay on this for a few weeks and gradually increase.

I also have a question about covering up in the sun and sun block. I use a 25 SPF face cream every day will I still need to use sunblock. I know I will if out and about...dies this also mean I have to use sunblock on arms legs etc every day thanks.

[exy21 in reply to Alley27]

Aza does the same as prednisone thinning your skin. So always spf30 and above.

[Alley27 in reply to exy21]

Thank you...I really hope this works because I want to be well. I will stay on 50mg with 6mg budesonide and increase with tolerance x

[exy21 in reply to Alley27]

Are you not under the care of a gastroenterologist? I am and he decides my meds never my doctor. And told by gastroenterologist never to stop meds ever without him having knowledge of it. Which we did recently and my alt went up and up so back on prednisone 10mg and 50mg aza. 1st time ever done this in 14yrs as wasn't well but it was omeprazole causing side effects.

[PoorlyLiver]

Hello there, has taken a while to get to your post again to respond. I started on Budesonide steroid (9mg ) and Azathioprine (50 mg) and then within a short period Budesonide (6mg) Azathioprine (100 mg). Now on Budesonide (3 mg) and Azathiopring (100 mg) since August 2019. My issue being autoimmune hepatitis. I did suffer digestive disorders, fatigue and extreme sensitivity to sun (even through clothing with cream on etc). Not actually sick or nauseous however. It takes bout 12 weeks for the levels of Aza to build up in your system, however after five months it would seem to be the culprit in being a bit "over effective" in terms of lowering my white blood count, platelets also a bit low. I did cut the dose a tiny bit for a couple of months and my levels rallied a bit, then back on 100 mg and seem to be ok now. Swinging back to gut issues - as the drug builds up in system, I thought surely is possible to take smaller doses of this drug over the day so as not to hit the body in one go and maybe help with my digestive issues, so have been taking 25mg x 4 a day for some months now, and - maybe coincidence - but gut issues more or less gone. I always take these after food and with a good sized glass of water. That said, I also have to avoid milk and butter now and very little in the way of meat in diet in order to keep my gut from playing up. Also noticing a bit less sensitive to the sun - although of course take every possible precaution when exposed. I know we all react very differently to medications, so none of this may help, but some of this might help. Another approach, I have read many posts in the AIH support Facebook group that Aza taken before bedtime so to sleep through the worst of the side-effects.

[Alley27]

Hi guys thanks for your replies. I am sorry to say that my stomach has never been this bad in my life. I had yet another bloating, gassy, painful, nauseous, vomiting episode today so I have decided that until I speak to my consultant on 7th, and after my ultrasound on 7th also I am not taking any more medication. I need to be able to keep them down for any benefit. I have pain in my right side that goes across my abdomen and up into my neck and head. I have constipation which I expect is caused by medication. I am so uncomfortable and I really don't deserve this at all...need answers because this is not right at all xx

[PoorlyLiver]

Started on 50 mg then up to 100 mg after a month. I felt tired about an hour after taking it, and it coincided with some bad GI issues - running to the toilet, gas, discomfort. I cannot swear to this being the solution.. and I did notice the fatigue element was less noticeable over time, but after some months I asked to try 25mg split over the day, I take after a snack or meal with lots of water. It seemed to help with GI issues. Also noticeable year 1 was extreme reaction to sunlight on skin - burning even in spring and autumn with just a few minutes in the sun. Misery, spent all that year having to cover up or slap on that dreadful very high factor sun cream. This year noticeably not quite so bad but am still very wary of sun exposure, I know we are told to be careful anyway, but I need no reminding, the sun does that for me.