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How did immunosuppressive drugs influence you over the years ?

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Posted 1/8/2016 4:22 PM (GMT 0)
I asked my GI, how long I will be on Imuran. He told me Imuran is taken for years.

Since it is an immunosuppressive drug I have to ask.

Do you get sick often? Do you get tired more easily? Did you notice anything else? What kind of dose do or did you take?

Thanks
Posted 1/8/2016 4:37 PM (GMT 0)
Imuran is a uc maintenance medication so you can take it pretty much indefinitely. I've been on 6mp since January 2013, I haven't been sick any more often than before it, not tired, no changes at all. I'm tapering off now as my gastroenterologist has diagnosed me in histological remission and remicade should now be enough without the 6mp.
Posted 1/8/2016 5:25 PM (GMT 0)

iPoop said...
Imuran is a uc maintenance medication so you can take it pretty much indefinitely. I've been on 6mp since January 2013, I haven't been sick any more often than before it, not tired, no changes at all. I'm tapering off now as my gastroenterologist has diagnosed me in histological remission and remicade should now be enough without the 6mp.

So why have I read on this forum that some people refused immmunosuppressive drugs ?
Posted 1/8/2016 5:49 PM (GMT 0)
I've taken it for 15 years with no side effects. I've not suffered with anything particularly ... Apart from a prob with repeated chicken pox.

I take a high dose vs weight ... 150mg has been my standard dose even though my weight varies. I weigh 112lbs (51kg) so ratio is 2.9 ... Above the normal max of 2.5 mg per kg. But dropping always caused flares.

Was sufficient alone for many years ... Although I did flare they were controllable and manageable. Only in recent years has it been insufficient.

There are a multitude of reasons why people choose not to take immunosuppressants.
Posted 1/8/2016 8:43 PM (GMT 0)

emilp89 said...
So why have I read on this forum that some people refused immmunosuppressive drugs ?


There are many reasons why people refuse immunosuppressive drugs, it's an individual choice. I can't really speak for everyone, I don't know their reasons. Id assume some are scared of the side effects, everyone has a certain risk threshold, side effects are rare (less than 1 percent of patients encounter them) but serious if they do occur. I'd also assume that some prefer going the natural route and exhausting everything supplement and diet option first.
Posted 1/9/2016 1:14 AM (GMT 0)
the cancer side effect is rare, but the liver toxicity is more often. You need regular blood tests. Large scale studies do not find people on low dose immune suppressants are not admitted to the hospital more often for infections. Some people do report taking a little to throw off infection or virus, but nothing requiring living in a bubble.

I was afraid of it, because I have bad luck with drugs. I know it is a mild immune suppressant, so I would take it if really needed. Patients with organ transplants take much higher doses and do it for life. For UC a small dose is used.

The anti-TNF biologics can also suppress the immune system
Posted 1/9/2016 5:17 AM (GMT 0)
I've had no problems with imuran so it doesn't affect my life whatsoever. I'm sure if I stopped taking it I'd feel the exact same to be honest. 6mp was much more helpful for me but my liver couldn't handle it and when I cut the dose in half, it didn't do anything for the flare. It's about finding a sweet spot between side effects and efficacy.

I didn't do much research on how often cancer happens before I started the drugs just because I was deathly ill and listened to my doctor. It wouldn't have changed my decision in the end though.
Posted 1/9/2016 6:54 AM (GMT 0)
back in November I did pick up some sort of pathogen or other sickness...possibly even food poisining? For a few weeks I thought maybe it was just my UC flaring up again after feeling pretty good after my first two infusions. But then my third one did nothing. I started to think I picked up cdiff, saw my doc and he thought it was possible too so he tested me for it but I came back negative. He thought I possibly got some sort of bug so gave me antibiotics and I started feeling better in a few days then had another infusion and felt even a little better.

I kind of chalked whatever I had picked up there to the immunosuppressors I'm on. Figured it was maybe something my body would have fought off quicker if I wasn't on them.

Otherwise, I haven't really noticed myself getting head colds or any other mild sicknesses more often now. I'm more tired that I used to be years ago but I'm getting older, have UC and am not in remission yet so can't really say its the immunosuppressors making me tired. I've become quite anal about washing my hands, not sharing drinks with other people and just generally staying away from things/situations that can make me sick too.
Posted 1/9/2016 2:22 PM (GMT 0)
I remember like it was yesterday - when I started 6mp, I sat with it on a table and just stared at it for the longest time before I took my first dose. My fear is that it wouldn't help and that I would get sick more frequently. I was constantly sick with various things as it was - bronchitis, sinus infection etc.

One of my fears came true, it didn't work for me but the other fear is that instead of getting sick more, I actually got sick less. However, when I did get sick - I got SICK. It was harder to fight off infections.

I was on it for about 3 or so years and I just couldn't get into the therapeutic range without liver toxicity so my GI put me on Remicade in addition to the 6mp. But I had to stop the 6mp because the Remi/6mp combo was causing foot neuropathy - which is a very rare side effect.
Posted 1/9/2016 10:38 PM (GMT 0)
I've been on Azathioprine for over a year now and for me there is no "burn time" when it comes to being out in the sun. Burn time starts immediately for me. Otherwise I don't notice any side effects.
Posted 1/10/2016 11:40 AM (GMT 0)

ki-wi said...
I've been on Azathioprine for over a year now and for me there is no "burn time" when it comes to being out in the sun. Burn time starts immediately for me. Otherwise I don't notice any side effects.

"burn time" ?

Are you saying you can feel the sun having a stronger effect on your skin ?
Posted 1/10/2016 11:55 AM (GMT 0)
I have been on Entyvio for over a year now
It has been a lifesaver for me . The other immunsuppression drugs did nothing for me
I had lost 30 LBs and was always sick and house bound
The scare of cancer never botheredme turn
Posted 1/10/2016 2:13 PM (GMT 0)
"Are you saying you can feel the sun having a stronger effect on your skin ?"

Yes, Azathioprine makes you more prone to sunburning. You sunburn quicker/easier. It's recommended to be more vigilant with sunscreen/covering up if you're going to be in the sun for many hours.
Posted 1/10/2016 3:51 PM (GMT 0)
Azathioprine's sun risk actually is for skin cancers developing with much less exposure than is normally required. I was on Aza for a couple of years. Since I normally burn in 15 minutes even with a sunscreen, I just stayed completely out of the sun. I didn't have any more infections than usual - maybe a cold every couple of years or so, but that's normal for me.

You really can't make decisions based on other people's fears. We see people who will take Prednisone for years to avoid a biologic. Biologics have a very low risk of serious side effects over time, while steroids are almost certain to lead tolong-term side effects (glaucoma, osteonecrosis, cataracts, etc.)if taken long enough. Each of us decides what we're willing to risk.
Posted 1/11/2016 11:17 AM (GMT 0)
I would echo what others on here say. I've been on Imuran for 7 plus years and noticed no real side effects after an initial 2 month period of getting used to it (gave me headaches at first). I rarely get ill (rarely did before being on Imuran). All of that said, I have lately had much lower WBC counts than ever before, so not sure what's going on with that. Am still in the acceptable range, but have regular monitoring.
Posted 1/11/2016 2:42 PM (GMT 0)
FSLondon, I was dancing just below and above the minimum for white blood cell count (and related items) for about 4 months then my number nosedived well below minimum. I had to reduce my dosage of 6mp to get back into range. It's one of the reasons you're regularly monitored, sudden low counts leukopenia/neutropenia can occur at any time. It's the medication working too well, and reducing the dosage resolves it. Keep up with your CBC and watch it.
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