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Posted 9/26/2007 7:51 PM (GMT 0)
I am on high dose prednisone and plaquenil. I've been on prednisone (mostly at 10-15 mg doses) for 22 years and plaquenil for ~12 years. This recent flare is a nasty one and we are now talking of starting Immuran (azathioprine). i am nervous and a bit scared of starting yet another immunosupressive, but its been pretty bad these days and I've had to go on disability.

What are people's experience with azathioprine? side effects? effectiveness?

THANKS for any input!!
Posted 9/26/2007 8:02 PM (GMT 0)
peilan, we're all different in the way we react to meds, but I hear that many people have good luck with imuran. I can't take it because I had what I believe was an allergic reaction to it, but i do take cellcept, which is another immunosuppressive and it makes me feel so much better. I also take prednisone and plaquenil. If you have a rheumy in whom you have confidence, it's probably worth a try. I'm sure others here will let you know of their experience with imuran. Let us know how you do.
Posted 9/26/2007 8:09 PM (GMT 0)
Hi Peilan . . . Welcome to the forum. I don't have any experience with Immuran, but I wanted to welcome you to the forum and encourage you to do whatever your body needs in terms of holding back the auto-immune attacks on your body. Like Patty said, if you have confidence in your doc, then you can be pretty sure about this new treatment. I think they use as little meds as possible and they are cautious about over medicating too. But, since you've stated that you've been worse recently, its a good bet you need more help in the way of meds. There are several here who take Immuran, so I'm sure you'll get more responses and welcomes over the next couple days. Glad you found us and I hope you make some good friends here. I have found this to be a loving supportive group and I am blessed each day by the support that I get here. Blessings!
Posted 9/26/2007 8:14 PM (GMT 0)
I could not take Imuran/Azathioprine at all. I had more than allergic reaction. My WBC dropped to nearly zero, and all my hair was lost. The platelet count was very low. Also, I had extremely severe mouth ulcer. All these happened within a week when I started taking it. I was in the hospital for nearly 10 days. I am one of the rare case which not normally happens. My doctor told me that most people tolerate well with this drug.
Posted 9/26/2007 8:21 PM (GMT 0)
I took Imuran for about 14 months with no bad reactions or side effects - nothing detrimental. Unfortunately, it wasn't doing anything benifical either. I'm moved on to using Cellcept, a much more expensive medication that has provided great results -- my cognitive dysfunction was growing w/out bounds, Cellcept has given me back a brain! So, as others have said, we all have different reactions -- I usually try what my dr suggests before dismissing it.
Posted 9/27/2007 2:09 AM (GMT 0)
Hi Peilan,

 

I've been on Imuran for 7 years now.  I take 50mg twice a day. That's sort of the standard dose.  I've had AMAZING success with it.  Saved my life, along with the prednisone.  I didn't experience any hair loss or upset stomach.  The only thing is slightly elevated liver enzymes. (it gets metabolized by the liver).  But nothing serious.  Like the others have said, it really is different for each person, but most people tolerate it well.  I'd take your doctor's advice and try it.  It takes about 4-6 weeks to kick in, so you have to be patient.  I hope you do really well on it!  I have nothing but good things to say!

 

Ginny

Posted 9/27/2007 2:23 AM (GMT 0)
I've been on Imuran 50mg twice daily for over a year now. I have experienced no major side effects. I take it along with prednisone, plaquenil, and cyclosporine. It's definitely worth a try. Good luck and God bless you, Judy
Posted 9/27/2007 8:34 PM (GMT 0)
Hi Peilan:

I tried Imuran and had an allergic reaction to you, but I know that it works for several of our members here. I've taken cellcept, methotrexate, enbrel, rituxan, and cytoxan for my lupus. Other than the cytoxan, which worked the best for me, and yet was the hardest on my body; the methotrexate seems to work so so, I too take prednisone and plaq. I'd like to welcome you to the forum too. Sorry I can't be of much help as far as the imuran goes, I think it would be worth trying though. Good luck and I hope it work well for you.

Take care,

Barbara
Posted 9/28/2007 3:11 AM (GMT 0)
Been on imuran for 2 years.  A small percentage cannot tolerate it which becomes obvious almost immediately.  Others have few side effects and many take it for years.

Until this summer I had no side effects.  However, long term users can have blood problems...lowers WBC, RBC and platelets.  In other words it can be too effective.  My doc has cut the dose from 150 to 75mg and I am being tested every other month.  Hopefully, that is all that has to be done.  Some patients are able to increase their dosage again after their blood returns to normal levels.

So, if you do tolerate it initially and continue to take it you should have blood tests every 2-3 months to make sure you are OK. 

Dosage varies by your body weight and whether or not it is for an AI disease or a transplant.

It has been around for 30+ years and has also been used by transplant patients so doctors have a lot of experience with it.  I would not be afraid to give it a try.  Most do well on it.

Bill

Posted 10/2/2007 3:44 PM (GMT 0)

i have been on imuran for about 4 months with no side effects.  it took a bit getting used to, had to play around with the time of day i would take it.  just remember to eat when you take it or it can cause a really bad upset tummy.  the bloodwork every week gets a bit much but its important to monitor your white blood cells.

good luck!

Posted 10/17/2007 6:53 PM (GMT 0)
Thanks all for your responses. They are reassuring, which i think is really what I need - to hear the patient perspective.

I did the genetic test (TMTP) so I am unlikely to have that allergic reaction to Imuran. So I started Imuran yesterday (with a good meal) and did not seemt o have any major problems. Though today I feel a bit flu-ish, that could just be a blip in the current SLE flare... will be doing weekly blood tests and will let yall know how it goes!

I think this recent flare has me scared - I've had lupus for over 20 years, with plenty of ups and downs, but this one has been different and scarier than my norm (the migraines have been terrifying and unpredictable along with the carcinoma scare). I have been more anxious than usual, which I know is affecting my physical responses (that whole mind-body connection). I have started meditating, hopefully that will help. But, this site is great - when I feel better I would like to participate more in this forum.

THanks SO much for you support!
Posted 10/17/2007 11:39 PM (GMT 0)
Hey Peilan . . . I will bump up another topic on Imuran in case there is info in that string that you can use. The title is "Do you Take Imuran" Good luck with your new med!! Blessings!
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