Anyone did or Doing Imuran/ Azathioprine?

I'm Supposed to start Imuran this week. I must confess I'm not excited... I think it's the human carcinogen factor that really has me bummed. But with the platelets hovering in the 2k-3k range I need to do something.

So I was wondering what has been other ITP'ers experience with Imuran. What were the side effects? How did it affect your day to day lives? Was there an increased rate of infections (colds flu's ect)? I work at a community college and every bug passes through the student population so i'm particularly worried about that.

Thanks! I'm really looking forward to your responses.

I just started Imuran about 6 weeks ago now. In the begining it made me nausous, it also gave me headaches and made me dizzy. They switched me over from cellcept to Imuran since my body couldnt handle the cellcept my liver enzymes were rising and I couldnt get on a full dose. Im on Imuran for issues other the ITP but I think it may be helping my counts. I did rituxian 4 months ago and got almost no response and since starting the Imuran my counts seems to have stablized. 2 weeks in a row my counts have been 40-50 even with a pred taper. The headaches have started subside and the nausea went away if I ate prior to taking the meds. I was started on 1/2 a pill for a week, then a full pill for 4 weeks and now am taking 2 pills a day. So we worked up to a full dose to help with the side effects.

Thanks for the information, I really appreciate it! Have you seen any movement in your platelets so far?

My counts for the past 3 weeks seems to have stablized from in the 30-50 range. Im not sure if its from the rituxian that I did in nov/dec of 2009 or from the imuran. My hema and rhema think its from the Imuran. Im happy with the results and just had my dosage upped to 125mg a day.

I am taking Imuran, along with Prednisone for ITP. My counts went up from 13 to 144 by the next count. I found that Imuran was making me feel ill, so I didn't take it for a few days. It showed on my platelet count by dropping. I started to take it again, and my platelets went back up. So for me it does help.
I took Prednisone for 18 months a few years ago. I was concerned about being infected also. I didn't touch my face, and I always washed my hands frequently. I don't recall catching anything. This time I am more concerned, because I had the flu last weekend; so I have started to use a surgical mask along with the other precautions. Hopefully that will help me.
Maybe you can try it first and see if it does help your counts. Then decide if you want to continue using it. My doctor only offered me Prednisone, or infusion therapy. When I refused to take as much Prednisone as he wanted me to, he added Imuran. What I am learning is that I need to weigh the risks vs. the benefits. The benefits are winning with me.

Hi there, Ive been on Azathioprine for almost 3yrs. I started off on 150mg now im taking 50mg every other day to see if my platelets can handle coming off it. At first i had dizzy spells and shivvers if id been in crowds. I dont think i picked up more colds etc than usual maybe less as i was cautious if anyone was sick i would not go near them. If you get a chest infection etc you will prob be prescribed antibiotics just incase. Azathioprine has been a saviour for me, it slowly rose my counts from 9k to a high of 385k on 150mg last count on 50mg was 255k. I have never had any problems with the other bloods and liver tests.
Azathioprine is definatley worth a try and the side effects are nowhere near as bad as predisonolone! Do remember though to take pregnancy precautions if your within the age limit.
Tiger it sounds like the Imuran is doing the job, good luck to you all.
Julia

thanks guys! Your information is encouraging.... sadly i'm reading that it's a bad idea to take imuran after an alkalyting agent ( I had cyclophosphamide (cytoxan) a month ago)as it increases your chances of getting cancer by almost 3 times! That truly bothers me so i'm quite apprehensive about taking it

Lorie:

If you think about that stuff too much, you'll go crazy. Remember, you have to do what you have to do to get through NOW, and worry about later, later. How many times did you have Cytoxin? If it was just once or twice, don't worry too much.

Even Prednisone raises the risk of cancer. All treatments have risks.

Too true Sandi, even going into the sun raises your risk of cancer but the vitamin D from the sun is so good for you. Do you avoid going into the sun?
If your no longer taking the Cytoxin it will not be in your body for long. I would not worry or panic over it.
Julia

Sandi, I'm so frustrated and my options feel so limited.I cant eat i cant sleep at night. I feel like someone has asked me to take poison, I know it sounds paranoid. I really dont want the Aza. I'm looking into cellcept, but apparently there's a special procedure I have to go through to get it as it's not kept on hand in surplus. They only have it for the renal transplant patients.

Julia: Where I live , I couldn't avoid the sun even if I tried. but i do wear daily face cream with spf 15 though! lol

Lorie, I had similar concerns to you with these drugs. As you know they can induce melanoma and I have had melanoma in the past but I decided that it was worth the risks and gave CellCept a try. It's more expensive than Aza if that's a consideration for you but anyway I took it for about 17 months. I had a good count while on it but had constant mild nausea and joint pains and that combined with my fear of it made me decide to stop. I did a slowish taper whereupon my counts slowly fell too. A while later I tried Aza but after six weeks it made me really sick and I stopped it. I may have kept going but I still had the melanoma fear so was quick to give up.

I don't really know how that helps you except to know that you aren't alone. I also feel now that these drugs are unlikely to trigger a long term remission for me and so I have refused to take them again. The risks for me seem too high. The doctors kept telling me that the risks weren't that great but when I said to them, how do you know, they couldn't answer.

Don't worry yourself sick over it, take some time to think it through. Write it down if it helps.. write down the pros and the cons, the fors and againsts and simply decide what you want to do. If you decide to give it a go then just go with it and just relax with the decision you have made. If you decide not to take it then be happy with that decision too. I have been lucky enough to get onto an Nplate trial, can't get the drug otherwise yet, but when that finishes I don't know what I'm going to do. But I shall make a decision and see it through. If you drift into it or feel pushed into it you won't feel happy, you need to make a real decision in order to be content with it.

Julia:

I don't stay out of the sun (although I should), but I do wear sunscreen all the time in the summer. My Vitamin D was really low last time I had it tested and I had to take a high dose script for about 12 weeks.

Lorie:

I know the feeling of having to take poison. I had a script for Cellcept and felt exactly the same way. I even called it my bottle of poison. I thought giving me a can of Drano would have felt the same way. Oddly enough, I allowed Rituxan to flow through my veins without much thought - how weird is that?

You'll figure this out. It just takes time. Maybe someone will give you that one piece of advice that will make sense to you. I hope so!

In all honesty cellcept hasnt been around long enough. After a 40min discussion with my rhema she explained to me how much better the Imuran would be for me vs. the cellcept. She told me the reason there arent that many studies on the cellcept is that it hasnt been out long enough. Yes there is an increase in lymphomas with the Imuran but they are starting to find the same with cellcept. Price wise the Imuran is alot cheaper. I was paying 554 a month for the cellcept until my deductible was met...now im paying 12 something for the Imuran. To get results from a little pill and not have to worry about the prednisone side effects is something that I cant begin to explain to you how happy am I. I have been on high dose prednisone for 7 months. Every drug you look at has it good and its bad. In my honest opinion I would do Imuran over cytoxin. That is a very powerful drug. If you keep reading all the what ifs you will drive yourself crazy. If your still on prednison asking for a sleeping pill may be beneficial. I know a good nights sleep really does help and make you feel much better.

I halfed my dose of Imuran 4wks ago from 1x50mg tablet every day to 1 every other day. My counts have been in the 250k mark for ages and thought if i could half it and see if thats whats been causing the joint hip pain. Anyhoo the days i missed the tablet i noticed a significant lack of joint pain and for the first 3wks i got Peters chest infect then cold so didn't notice a drop in platelets other than a bruise on my toe so figured my immune system was concentrating on fighting the cold not the plateles. Since a couple of days ago ive felt very tired/lethargic, tempremental to the point i went to the animal shelter where i help out and found myself crying for 3hrs & felt so depressed all day. I went in the bath that night and found 2x 3inch purple bruises on each thigh that i cant remember injuring & the roof of my mouth is sore from blood blisters. I have an appointment to see what my count is tomorrow and go back to the 50mg a day which im more than happy with to keep this under control but will just have to put up with the hip pain, atleast i know what it is now but its a small price.
Julia

Julia,
Im sorry your feeling so bad. I hope that they can figure out what the joint pain is-I know what its like Im having edema in my legs really bad (I was told its steriod induced). I hope your counts go back up or at least the blood blisters go away. Those are so painful. Keep your chin up.

Hi Julia, I get the same scrambled emotions when my counts drop. I hope you get them back up soon. Do you have a good Dr that can help figure out the hip pain? Hope you feel better soon.

Jen & Tortie, thanks, Im sure my count will go back up once i get the proper dose into my system again.
Ive had all the tests for the joint pain and they all came back fine, once i halfed the dose i found that the days after i didnt take the Imuran i had a big reduction in pain so i think its from the Imuran. I think its more frustrating when you dont know how your getting the pain so im glad i know for definate now.
Jen, are you finding your edema any better with the reduction in pred? Horrible stuff!
Hope it goes soon
Julia

Been for bloods and heama today and could not believe my count.
Last month it was 249k on 50mg, today 260k on 50mg every other day! I cant understand the bruising and the mouth, even when i got my bloods done it took 25mins before they would let me leave as the bleeding wouldn't stop.
It was a different nurse so she got the blame for that and ive to go back in 6wks staying on the same dose then may be able to stop it after that.
Ive been sneezing all day so wondering if ive just been run down getting cold or hayfever. I just don't know i was convinced they had gone down!

Julia

Just a quick update. Now On AZa for about 17 days. last week had CBC done and was back down at my usual 2k . but I'm still watching because the Doc's tell me that Aza is a slow working drug. I'm presently on 200mg's apparently my doc made it that high because of my mass. The tummy issues have resolved for the most part. I'm Off to see my GP/Internist today ( No Hemo Where I live) and Get a CBC right now i'm hoping for a little rise even if it's to 5K. lol

Hi Lorie, good luck with the doc's, yes Aza is a slow acting drug, 17 days is still early days but hopefully you will see a small rise.
Julia