I would be interested to learn from other members of the group about their experiences with Azathioprine. I was tried on Azathioprine twice and even with a very low dosage (5 mgs) I had a terrible reaction both times. I was violently sick, dizzy, shaking, feverish, came out in a rash and hence was taken off the drug. One of the annoying things I found is that before taking Azathioprine my specialist at that time did not give me any warning about how violently my system might react to it and yet once I did react badly to it he afterwards said that my response was quite common !!!!
Luckily with a new specialist I went on to have Rituximab treatment which has put me in remission now since August 2010 and for which I will be forever grateful.
Anyway would be interested to hear how others have reacted to Azathioprine.
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AnthonyHeard
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Hi, Sorry you had that kind of a reaction to it, I started on 150mg whilst on 40mg of Pred-had been 60mg and 15mg of Lanzaprozol. The only things i can think of whilst on it was dry eyes, dizzyness and pain in my hip where i had the bone marrow biopsy. Pred did very little, rose my counts from 9k to 145 in 5 days but plummeted back to 9-10 as soon as i started to taper.The side effects of the pred for me was 100x worse than the Aza. Within 2 wks of starting Azathioprine my count went from 9k to 14k then 21k the following week. It kept on rising until 365k and i reduced to 100mg then 50mg then nothing. I kept my spleen after being told i needed it removed and my body doesn;t need it anyway. Azathoprine has been such a blessing for me. Were you on any other medication at the same time as taking it? 5mg is a very low dose, did you get a blood test done first to see if you had some gene that makes it 100x stronger? Glad your sorted with the Rituxan, i was told i wasn't allowed that as it was only availiable for cancer patients.
I started off on 100mg of Azathioprine daily, 9 months ago, felt a little queasy on it, but fine other than that. Think I was on about 30mg prednisolone daily at that time.
After a month they bumped it up to 200mg, which I am still on, but am now down to 5mg of prednisolone daily.
I've got used to the queasiness, finding some irritation from bright lights, seem to lose some spacial awareness at times - walk into doorframes and stuff on occasion, and lots of muscle and joint pain, but can't really be sure what's causing anything these days.
Currently my usual treatment is Anti-D, 18,000 units ish when my platelet count falls below 10/15ish.
I had no response to rituximab whatsoever. It seems they may as well have just put me on a saline drip!
My haematology appointments are roughly every 4 weeks, and the longest I've been without treatment to date is 9 weeks.
I am pleased to hear that Azathioprine has given you a positive response Juliah and that the side effects have been relatively bearable. In answer to your question about whether I was on any other medication when I took Azathioprine, the answer is that yes I was on Prednisolone (albeit I was on a reducing dosage) and Omeprazole plus Alendronic Acid. I suppose that our experiences with the various drugs re-iterates that we all respond differently to different treatments.
It is just about getting platelet levels up to safe levels, minimising risk and side effects and that will be achieved by different methods in each case. The problem is that so much of it seems to be trial and error until the best option is found.
Regarding your response owenm to Rituximab , I have heard of quite a few cases like your own where it made no impact at all, and quite a few where no impact was seen until 2 - 3 months after treatment.
Just wondered owen m if they have mentioned or discussed the relatively new treatment...Eltrombopag ( known as Revolade in the UK, Promacta in the USA)?
Eltombopag looks to stimulate extra platelet production rather than suppress the immune system like steroids or Azathioprine, or block platelet destruction like Anti-D. For all the various treatment details see the website at itpsupport.org.uk) if you have not already looked it up.
The bottom line is that ITP is just so unpredictable, maddeningly frustrating and frankly I have come to accept that absolutely NOTHING IS DEFINITE !!!
I had a bone marrow biopsy before I received my Rituximag treatment in July 2010 and from my experience I thought that I should give you a warning. In case you did not know, the bone marrow biopsy is quite painful. The pain is over with quite quickly but nevertheless it is painful. I had the biopsy without sedation but if you have a low pain threshold I would suggest you take the option of sedation. Frankly I did not really know what to expect so had the biopsy pretty much without knowing very much. The old saying "ignorance is bliss", certainly applied to me. The whole process took about 20 minutes but you will be kept for about an hour afterwards as they want to ensure that your system settles down again afterwards and that you recover. The sample is taken from the hip and this is done by a needle into the rump. The first part of the procedure takes sample fluid and this is not painful, the next bit takes the actual bone marrow sample and is the painful bit. You may get a bit of pain from it (acheiness) for a couple of days afterwards. It will feel a bit tender and they will suggest you take Paracetemol to ease it, albeit I did not in the end need them. The actual puncture wound healed up within a week.
The procedure is over quite quickly but just thought that I should give you an idea of what I experienced. Hope this helps.
I've had a very positive experience with Azathioprine (Imuran). I take 150 mg every day and it is the only drug that has been able to keep my platelet count stable. Other than being a little tired, I can only say positive things about Imuran. It is a Chemo drug, so that could be why you reacted so negatively to it. It is also used as an organ donation anti-rejection drug. But my doc is keeping me on it indefinitely because I have responded to it so well. I've had ITP since 2008 and in that time, I have had two splenectomies been on all the "traditional" therapies, taken N-plate (which did nothing for me) Rituxan, Vincristine, IVIG, Danazol.I've been poked prodded and scared to death by one of my doctors in the hospital who tried to convince me I had Lymphoma and Leukemia, which I don't. I just have a stubborn case of ITP and Imuran is the only drug that has worked for me. I am now 4-5 months into my second remission. Since having a second round of ITP increases your chances of have a third round of ITP, I think I'll stay on the Imuran a while longer.
Thank you for your feedback Emily and I am really pleased that Azathioprine (Imuran) has had such a positive outcome for you. I guess that all our different experiences with ITP and the various treatments we have all tried just serves to reinforce the fact that different things work for different people. Once again I revert to my usual ITP catch phrase ...... "The only definite thing about ITP, is that NOTHING IS DEFINITE ! "
I took aziathiopine and it made me really ill. I was sick dizzy and lost a stone in weight in a week. I had to come off it and never want to take it again as I felt so awful. Prednisolone seems to work for me so far. I have had four episodes of ery low platelets the lowest being 6. At the moment I am not to bad and not on any medication for my ITP. I was diagnosed when I was 62 and had it for five years now. I am learning to cope but it is good to be in touch with people who really understand what it is like. Good luck.
Thank you for your comments Val-ann. It sounds like you had a similar reaction to Azathioprine as I did. Pleased to hear that you are currently free of any medication and your ITP is under control at present. Welcome to the group and please do keep in touch.
I too had a bad reaction to azathioprine. It immediately made me feel nauseous and after a couple of weeks as soon as I took it I vomited. I tried taking with food and hours before food, on an empty stomach and all sorts but was sick every time so I stopped taking it. I also had a bad reaction to mycophenolate, another immunosuppressant with aching joints, nausea and a weird itchy red rash on my legs.
Thank you for your comments burnt_toast. I just could not handle Azaithioprine even though one of my specialists was determined that I would. He prescribed it to me twice and to be honest I just don`t think that he had the ITP expertise to look at doing anything else. It was only in 2010 after 4 years on and off Prednisolone and 2 attempts at Azaithioprine that I was eventually given Rituximab which has put me in remission ever since. It highlights for me the need to really question what your specialist is suggesting because after all ITP is so relatively rare that not all specialists/haematologists are even by their own admission "experts". It is certainly always worth getting a second opinion if you are not happy about the advice/treatment being offered to you.
its wuite interesting to read your blog, my son was treated wit h rituximab last year and the treatment was nsuccessful, the side effects were very somall on first dose but then after he had no reaction at all, doctors are now suggesting we try azathioprine and we are very wary about the side effects wiht this drug short and long term!!!!! hes on 5 years old!!!
Hi Anthony, only just found this and I can't remember any bad side effects but I was taking them alongside the prednisolone and Losec or Omeprazoles as they are known now. Maybe the steroids were hiding it as I suffered from them to start with, the Azathioprine was an attempt to wean me off the steroids and substitute them for a while but it didn't work. I was tested with so many things and the only reaction they had was to the steroids. My count was so up and down that they brought me off slowly and then my count evened out for a bit. Now it's stabilised and hopefully on the up after the last appointment but we will see
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