Imuran, why didn't the doctor tell me??

huh? all drugs have side effects.

Some people love Imuran.

I think you have to think about the positive affects thia drug will have if it works. Did not work for me but hopefully you are lucky and I would think its safer than TNF blockers.

Dorri, just like with everything else you need to communicate with your DR about these things. Yes, s/he should volunteer information about the risks and benefits of every treatment option. But it's your responsibility, too, to ask questions. Does your DR know that you take care of your young grandchildren often? That kind of information would help him/her decide what options are best for you.

I think Imuran is a pretty well understood drug and offers a potentially important opportunity for you to get better. But yes, there are risks.

I've been on 6MP, an immunomodulator, for 8 years now. The instructional sheet for 6MP tells you to take special precautions to protect your compromised immune system. I've been around sick family members often, and I've never caught what they have. I did truly horrific and unsanitary things after Hurricane Katrina--things that literally killed other people, through exposure to toxins--and never had anything happen to me. When I asked my doctor how I could be on such a powerful drug and never get sick, he shrugged and said, "You must have an incredibly powerful immune system." This drug has been a lifesaver for me, in that I've been in remission since I started taking it. And I've never experienced any side effects or gotten sick any more frequently than I used to. It is a bummer, though, that I can't take any live virus vaccines (especially the one for shingles). Talk to your doctor about your concerns, but, in the meantime, don't agonize too much about all of this.

@ dorri - yes you can still take a flu shot, just make sure its always one that DOES NOT contain the live virus. Also as others have mentioned wash your hands often and I suggest keeping hand sanitizer on hand in either liquid form or the wipes you can buy. It does vary from person to person how often you get sick, like me personally since I've been on Imuran I get sick 2-3 times a month and takes 1-2 weeks to get better each time.


~*Astro*~

Whew!!! And "I" sure wouldn't get in a twit about possible Imuran side effects after agreeing to prednisone for so many years!!!! I'll take Imuran any day rather than prednisone.

And as a matter of fact I do! I read up on Imuran before I agreed to start taking it. But I knew enough about prednisone already that I refuse to take it except in the most dire of circumstances. I avoid steroid inhalers for my COPD, etc.

Imuran and Pentasa have successfully kept me in symptomatic and/or total remission since 2003 after my Crohn's activity resumed in 1998. Pentasa alone couldn't "cut the mustard" but the addition of Imuran provided the boost needed to put me in remission and to pretty much keep me there. If I get slack about taking the Pentasa I'll start getting some minor symptoms so in my case I seem to need the combination of Pentasa w/the Imuran.

I've had two pneumonia shots whilst taking Imuran, I get the flu shot each year and I volunteered at our local hospital for 5 years after starting Imuran as a Messenger meaning I was visiting every floor in the hospital delivering inter-departmental mail and I've had fewer colds, etc. since starting Imuran than before even tho I have COPD as well as the Crohn's.

As mentioned above the only vaccines you need to be sure to avoid are the live-virus vaccines or as your doctor recommends. I've even read of several in this forum who have gone thru successful pregnancies and births whilst on Imuran or 6MP.

Thanks you guys are great, and I am planning to give imuran a fair shot. How long does imuran take to kick in?
Since I went off pred in the fall, I've fallen prey to just about everything the kids had, including pink eye that took close to a month to go away, sinus infection, rhinitis and late in the spring shingles. I can't tolerate cold and get hypothermia so nothing warms me up until it passes. This was happening almost daily. The doctor told me I'm allergic to the cold, and there is such a thing, yet I believe most of it is immune related. I am anxious to see if Imuran will take care of some of my other immune related problems.

Post Edited (dorri) : 7/7/2012 4:11:42 PM (GMT-6)

dorri said...
Astro thanks, I guess the crohn's is really bad for you. Sounds like you are sick most of the time. No fun, I see you are on a lot of meds. I was really sick with the crohn's until I had the resection. That initself relieved me of incredible pain. Now it's more of a discomfort and uncomfortable feeling and with chronic diarrhea but it's really no where near what I had. I've been on prednisone for near 30 years and just went off last fall. It was a challenge and still is because I've never been so sick for a long time with one thing or another after I went off prednisone. The prednisone did help me through some tough bowel times, and surprisingly I seldom had a cold or flu while on it. The biggest problem is what it did to my bones.

Dorri, it sounds like you've been through a lot, especially with prednisone.

Have you made any dietary changes at all in these past 30 years? Have any supplements been of help to you?

When you get the chills drink something warm, hot tea, hot cocoa, etc. Warm yourself up from the inside out. Its also nice to wrap your hands around that warm cup of whatever. Feels so good! Then bundle up. I have a light weight down vest I like to don when I get those doggone chills. I guess I just assume that some days my body is just too busy digesting my latest meal to be able to keep up w/my heat generation needs.

Thanks all, lol that's all I do is drink hot tea. Yes the ileocecal valve was removed. Questran does help but lately I can't take it without problems because of a sb narrowing. It does help to slow down things most of the time, but lately after taking it, it feels like things are stuck in there and it becomes very uncomfortable.

Yes as I have been told the secum is gone too and the appendex, they removed 3 ft of disease, I had the cm's written down but can't find it at the moment.
So that's it, guess there's no other hope to stop the diarrhea other than Questran? That's something else they didn't tell me until I found out on my own after the surgery. It's upsetting to be running to the washroom all the time. It's ruined many an outing? However, if I had to make a choice between the pain I suffered before and the diarrhea, I would opt for the diarrhea as unconvenient as it is.
I already cut to half dose with questran and that is the amount that I'm having uncomfortable symptoms with now because of the narrowing. Guess it won't hurt to try 1/4 dose and see if it will do any good.
Thanks for the replies and advice.

nawlinscate and all others who have been diagnosed bowel disease and also those who are suffering and waiting to be diagnosed, my thoughts go out to you and for you. I know you share my pain, discomfort and at times discouragement and frustration.

nawlinscate, where do I buy Motofen, does it ease the diarrhea as well or do you use it for energy.
The questran does help to slow me down, and I think it slows things down around the narrowed area and I feel pressure like something is stuck there, at times it feels like it all goes up and sits in my throat area.