Hi I have ITP since October and now been prescribed Azathioprine....does anyone have any experience with this drug? Thanks

[jmc37]

[AnthonyHeard Administrator ITP Support Association]

Hello jmc37 regarding Azathioprine if you have a look under Community Blog on this site you will see that we have had a discussion about Azathioprine and some interesting responses about it from a number of our followers. I originally posted the following on the blog on 17th December 2011 and hope this all helps.

The following is the original blog I posted on 17th Dec 2011......

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 hasput 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

[jmc37 in reply to AnthonyHeard]

Hi I read it some very mixed reviews. This is my 4rth day on it and feel sick and couldnt sleep at all last night. I have had a reaction to iv immboglobin, Nplate gave me terrible side effect, emtorblag or what ever it is called did not work, steroids are not an option as I have stomach ulcers. So keeping fingers crossed this new drug works and doesnt give out to many side effects.

[AnthonyHeard Administrator ITP Support Association]

Have you tried Rituximab? I have thankfully been in remission since August 2010 since I had Rituximab treatment. With Azathioprine I have had discussions with quite a few ITP sufferers who have had good results with it but as you say just like all treatments it is a mixed bag and just a matter of trial and error until each individual can come to a treatment which best suits them. A further useful link if you have not already seen it is .......itpsupport.org.uk/treatment...

[owenm]

Jmc37,

I've been on Azathioprine now for well over a year, I've been off the steroids now for 3 months, and receive regular treatments of anti-d.

I was originally started on 100mg per day of Azathioprine, which did indeed make me feel sick. After 4 weeks of that, at my next appointment, I told my Haematologist of my symptoms, my dose was increased to 200mg per day, and it was suggested to me to take the medication in the evening instead of in the morning.

This has helped me immensely, I now feel less of the side effects.

I would suggest drinking plenty of water with this particular medication, hot water as opposed to tea or coffee does seem to decrease the dehydration I encounter with it.

I have a friend with crohns disease who has been on azathioprine for the last 12/13 years, she takes her 200mg dose split between the morning and the evening.

Hope that gives you something to mull over or chat about

Owen

[Rachaely]

I took my first tablet of azathioprine 30 minutes ago ... after a very large lunch! Have read lots of advice on this and other forums, and generally it seems that if you take it just after eating, it can help with the nausea. Early days for me, will report back to you all if anything untoward happens! Not expecting count to go up any time soon (am only on 50mg to see how I tolerate it) but they'll increase the dose if I feel OK, and then maybe my count will go to double figures one day!

[swheels]

I had this prescribed to me to try and substitute for the steroids, so at one time I was taking both. I already had bad acid and indegestion from the steroids so was given losec or Omeprozole as it is now. As the results were not conclusive enough, some improvement but it dropped of after a while. My platelet count was very irratic, up and down so many times. I was taken off it, then tried the immuno Globulins, but it was a new one and I had a weeks trial. This was a temporary fix too so was never given it again. I dont remember any severe reactions to it but as I was still taking the steroids too I may have put it down to them as I had bouts of sickness at the early stages of high doses of prednisilone.

[Juliah]

I started on 150mg day 1x50mg tablet 3xday. First i had a blood test for some antibody or something which makes it work something like 1000x stronger if you have it so they are supposed to check 1st but its rare. I cant remember if it was a tablet with a glass of water half an hr before or after food to stop nausea, i felt a little dizzy at first and dry eyed but after 1wk my count went from 10k to 14k the following 17k then 21k it slowly rose to about 360k then i dropped to 100mg then when that stabilised down to 50mg then stopped them. I have been off them almost 1yr and my counts are still stable at around 250k Pred was 1million times worse for me and if my counts drop again i will have no hesitation to take Azathioprine again, never again for the Pred.