Imuran?

I haven't seen any posts relating to this drug, so I figured I would start one!

I began my ITP treatment 2 years ago with NPlate, then got stuck on Dexamethasone once a month for about a year. I am currently transitioning from the Dex to Imuran. I take 100 mg a day of Imuran, and I use the steroids as a backup when my counts go down (and my pc's go WAY down- 2,000 is a regular low for me). I've had to use it once a month for the two months that I've been taking the Imuran, but I'm hoping this doesn't mean the Imuran isn't working and so I'm trying to be patient. My hematologist DID tell me that it may take a month or two for the Imuran to kick in. I'm wondering if anyone has had similar experience? I'm really dying to get off the steroids; most of us know how horrible they are, even in small doses. I've experienced practically no side effects with the Imuran, so I would love for it to work!

Thanks in advance for your advice!
Sam

Sam:

Imuran isn't used very often, but a few people have had positive responses. It can take some time though.

I tried it but it made me sick, as in vomit so I stopped it. It used to be tried a lot but people seem to go on to the new drugs, Promacta and Nplate instead now.

I've been taking imuran (azathioprine) for a couple years now to keep psoriasis under control. I take 100 mg/day, and have had no adverse side effects.

Marcus

Tried it years ago. Didn't work for me and came with a lot of side effects, as I recall -- nausea, throwing up, weight loss, that sort of thing.

Hi everyone , I've some doubts about imuran:

1- why it's not widely used?
2- how long (in average) it takes to kick?
3- and what "kick" means? platelets start slowly increasing? how much per month?
4- what is the remission or partial remission rate with imuran?


I'm taking imuran for 3 months (since September) , no side effects, and my platelets remain at 45k level, when I started imuran they were at 43k.

i will appreciate if you can answer my questions.

Merry Christmas for all of you !

Best Regards from Portugal !
Pedro

Imuran otherwise known as azathioprine along with other immunosuppressants like CellCept (mycophenolate) is still used in the UK but in the US where most here are, they tend to go to the new drugs Promacta (Revolade) and Nplate more quickly than we do. For that reason it isn't discussed here as often as it used to be.

Imuaran is said to work for about 40% of patients and may take up to three months to start working.. but it has to be taken continually as coming off it will usually see the count fall again.

I am curious as to why you are treating at all with a count of 40 or 50. Most doctors won't treat until the count is under 20 or 30 and some wait until it's under 10.

Thanks for your answer Ann.

The reason for being treated it's in order to get (try) a stable count around 70k, it's my Doctor's goal...

Do you think it's not a good strategy?

thanks

I think it's an unorthodox strategy. Do you do sports or activities that need a higher count maybe? That would be a good reason. Otherwise I'd ask why he wants such a high count. Most are happy with a count above 30.

I sort of agree - this is definitely a 'risk vs. benefit' situation.

Ann and Sandi, I understand the risk vs benefit thing and I am not a big fan of imuaran anyway buy just a general question in regards to living with counts of 30, if you had say a car accident at a count below say 50 would you be less likely to survive? I am pretty comfortable with the whole ITP thing but I still sometime think about car accidents, emergency surgery that sort of situation, what would happen?

Milly - that is a hard question to answer. For emergency surgery, they would probably use platelet transfusions. As far as an accident, if an ITP patient had immediate medical response, they could probably slow the bleeding with pressure like they would anyone else. Of course the risk is greater with lower than normal counts, but people with normal counts can bleed to death as well.

There was a woman on here once who was worried about her husband using a chain saw. My thought is that if you hack yourself with a chain saw, you're going to bleed pretty bad, ITP or not.

I suppose the outcome would depend on a lot of things. Cutting an artery in a car accident would be bad no matter what the count. Any other trauma (other than head) could probably be handled.

People worried about those types of situations should wear a medical bracelet. I have one that I wear while driving and riding on my boyfriend's motorcycle- he bought it for me because I was afraid of it. www.utagice.com <

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These are really cool!

Sandi
The chain saw story is so true and I don't think I will be wrestling with chain saws but I think you get my point. I wasn't really asking for myself as I usually have a rough idea what my counts are doing. There are situations where I think living with low counts would be hard, something as simple as an airbag in a car that is meant to save a life could cause an ITP person a problem.
Sam,
I don't have a medic alert bracelet, don't feel the need for it. I bracelet is fine for those that want them but not much help if there is no medics around.

Ha - yeah, I've seen air bags do some damage. I really don't know, Milly. I guess it would all depend on the person and the situation. I really didn't worry about it with counts in the 30's....don't know why.

Maybe I am just not that comfortable with the whole ITP thing yet, I suppose I will get there one day, counts under about 50 or 60 still scare me.

I have acute refractory ITP; without constant treatment/medication my counts go straight down to 2-5 thousand. So although it isn't ideal, having a low yet steady count isn't as bad as it seems.

My former hemo says you can have open heart surgery with platelet counts of 50. I'd like to have higher counts but its just that the drugs that will get me there aren't safe! So again weighing the benefits vs the risks.

I live with low counts too. I tend to not have bleeding problems with low counts but some people do, and thats something consider.

Kosmus I agree you might question your doctors thinking about wanting counts to be 70. Because Imuran can have serious side effects like cancer and suppressed immune system. Often the treatments can be more risky than ITP. We all have had to work things out with our doctors it seems. I've noticed that my doctors have often trusted the drugs and splenectomy but not the low counts. Over the years I've grown to trust the low counts more.

Healthy New Year to all!

Thanks for your answers all and sorry Sam didn't mean to hijack your original question re the imuran. I just find it adds to the whole ITP confusion over what is safe, what is a count that people can live with, when to treat and when not to treat and if people are living with counts under 50 why treat at all? Seems as though there is no correct answer.

I used my chainsaws all the time when I had 10k counts......life doesn't have to come to a screeching halt and my trees don't stop growing just because I have ITP. I also mow, use sharp-pointy implements, and I usually spend at least one afternoon a week at the shooting range. I refuse to live in a bubble.

If my count would stay around 50k without treatment, I would not treat only to get it to 70k. Not that big of a difference IMO.
But as we all know, everyone is different.
(Note: without treatment I crash to sub-5k within days)

Hah weirdjack, maybe you should juggle chainsaws and really up the ante!

But seriously - shooting range? Are there many injuries on shooting ranges? I've never heard of one but then I've never been to one either.

I bet just routine driving is statistically the most dangerous thing for severe low count people, followed by taking a shower (falls).
Erica

I didn't stop doing anything either. My husband would have a fit if he saw me using a knife. I told him there was no way I would die nicking my finger. I didn't do anything dangerous, but I didn't before ITP either.

maybe you should juggle chainsaws and really up the ante!

I thought about that....but I only have one chainsaw and I cannot juggle.

shooting range? Are there many injuries on shooting ranges?

Yes....there are normal everyday injuries in shooting sports. There are also bad accidents.
Actually, you might be surprised at how often one can cut oneself while shooting. Several of my pistols are renown for what is termed 'slide-bite'. If held slightly off, the slide slices two grooves in your thumb-web as it cycles. Walther PPK's are well-known for this.
Aside from the normal goofy cuts and abrasions, there is the quite real chance that one may accidentally find someone's errant bullet poking random holes in one's body.
And have you ever seen the bruise left on a healthy shoulder after a couple hours of shooting a .75 caliber flintlock musket or even something fairly tame like an AK47? Multiply 'normal bruising' by ITP and you end up with a black shoulder. And no, I refuse to put a rubber pad on my flintlocks and my AK!
Oh yes, and I also hunt....usually alone.....usually in a deserted part of the woods. I did make a concession to my wife and started carrying a mobile phone when I am in the woods.

I bet just routine driving is statistically the most dangerous thing for severe low count people, followed by taking a shower.

I will most certainly agree with that. We tend to look at certain things as dangerous, but not other things. My 30-minute drive to work is probably more dangerous than most anything else I do.
Well.....it is until I get a couple more chainsaws and start Clown College.

My main danger is, ridiculousy enough, walking in my driveway when it's snowing. I've fallen in the driveway more time than I can count, and yes, counts were low when I did.

To try to get off prednisone (and keep platelets at an acceptable level) I tried imuran, and took it at the same time as mycophenolate mofetil, and cyclosporine. No effect for me -

Mark