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GI doc agrees to slow taper and pushes hard for me to go on IMURAN - please comment

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Posted 3/12/2013 11:21 PM (GMT 0)
If you have been on Imuran please add your datapoints :

Reason:
Duration:
Satisfaction level:
Lymphoma concern level:

He explained it as better cancer odds than everything else I have tried. It has been a bad 2 months UC wise I was closing in on 24 months no flare no meds when everything changed.

For me not being able to have a chance to see a fatal cancer coming and get out of the way is too much risk, it would be like me flying blind and I mean no looking out the window because of foggles simulating IMC or actual IMC but also....having no instruments.

That is not me I need a sporting chance.

Should be interesting to see what people have to say.

Do these guys make money when they sell it to a UC lifer ? I could not help but feel the money there.
Posted 3/12/2013 11:44 PM (GMT 0)
I couldn't handle Imuran but everyone reacts differently. Yes there is a slight risk of lymphoma but I think it happened within a certain age range - 18-24 years of age, when hormones are still raging. Plus, if I'm not mistaken, the people who got it were on other immune suppressing medications like anti-TNF inhibitors.
Posted 3/12/2013 11:55 PM (GMT 0)
I second what stealthguardian says- and I too cannot tolerate Imuran- the light nausea, brain fog, and "old mans" dry skin that I temporarily got from it I suppose I could have handled, but the nasty arthritic pains it gave in the joints of my fingers and, when I upped the dose another syep, elbows and knees were too much to bear. Still, the data doesnt indicate much increase in cancer risk at all, and that mostly for when it is combined with biologics, so if you haplen to tolerate it well I woiuldnt lose sleep over that. Most posters do seem to complain a lot about fatigue and nausea as pretty obnoxious, while obviously some here notice no side effects, the lucky buggers.
Posted 3/13/2013 12:13 AM (GMT 0)
I am on 6mp. I must be coming up on 2 years on it... I started it because I was flaring and couldn't taper off prednisone without UC symptoms. I have had great luck thus far. I am very happy and thankful that for whatever reason, this very low dose keeps things at bay. I don't worry too much about lymphoma but that's just me. I figure something is going to get me eventually and the chances are probably less than the chances of getting in a deadly car accident.
Posted 3/13/2013 12:15 AM (GMT 0)
I was on 6mp which I understand is similar.
Reason: nothing less was working
Duration: over 6 months under a year
Satisfaction level: not satisfied, no improvement and bad side effects, fatigue, low energy, low stamina
lymphona concern level: at the time not concerned. since then I've had 2 squamous skin cancers, one on shoulder (not exposed to sun much at all) and ankle (I always wore sunblock). removal painful on leg and shoulder became infected and miserable experience.

I think reportage of cancer and 6mp would be low due to inability to connect them over elapsed time. I did not report mine and no doctor ever asked. I just feel they are connected.
Posted 3/13/2013 12:19 AM (GMT 0)
I was on Azathioprine a few years ago and it put me into semi-remission. I always had to fight mucus if I remember correctly but that was the lesser evil. It stopped working after a while so my GI just had me stop taking it. My new GI wants me on Imuran again and I'm on 50 mg starting dose. So far I'm still flaring. I seem to take on the side effects well.
Posted 3/13/2013 12:43 AM (GMT 0)
Also on Azathioprine at the moment (125 mg). I started taking after flaring again while on just Lialda. So far so good. No side effects. I'm off Prednisone and doing well. I'll be much happier if I can say the same a few months from now.

I do think about the risks but they are relatively low (1/10,000 for non-takers vs 1/2,500 for those on the drug) and rest easier knowing that my bloodwork is monitored regularly.
Posted 3/13/2013 12:49 AM (GMT 0)
Fascinating reading these reports as windows into your lives. Thanks for giving them to me.
Posted 3/13/2013 4:40 AM (GMT 0)
I take 200 mg of azathioprine daily. Was put on it 18 months ago and it helped get me under control after being sick for 6 months and it was my first flare. I quit taking all my meds in Feb 2012 and was doing pretty ok until this last November and the flare went full force. Back on azathioprine again at 200 mg and again it's helping. However, I don't get better than the point I'm at. I'm not bed ridden anymore but I don't improve past this point. Will be starting Humira or Remicade in the next week or so to see how I respond.

I do have to say though - without the azathioprine, I'm in very very bad shape. Asacol and prednisone alone have never worked for me. It has always been the azathioprine that got me back on my feet. I also love that it is not ridiculously expensive for me with insurance like the Asacol is.
Posted 3/13/2013 4:52 AM (GMT 0)
GIs just wanted Something else other than pred. Been on it for about 4 months at 50mg. I dont think its helping though.
Posted 3/13/2013 11:06 AM (GMT 0)
I am at 200 mg. Been taking it for just over a year now. I had to add remicade as the the imuran was not doing nearly enough. Rmicade is doing more, but still not in remission. Cancer risk: definitely makes me nervous...
Posted 3/13/2013 11:36 AM (GMT 0)
(6mp)

Reason:5ASA not getting the job done (still taking Pentasa though)
Duration: 18 months
Satisfaction level: moderate. I had a flare a few months after getting better once I started, but have been in remission and off pred for 4.5 months, with six months being my longest remission ever. I attriute this to DMSO tho, or the combo of it, 6mp, VSL, and 5ASA.
Lymphoma concern level: moderate. My metabolite level was at the bottom end of the intermediate range so I am only on 50 mg, so I am more concerened about effects of that.

Posted 3/13/2013 12:20 PM (GMT 0)
I'm also on 6mp

Reason: Flaring badly with daily meds of 5g Lialda and daily Rowasa enema which seemed to no longer be enough for me.
Duration: 2 months
Satisfaction level: Very happy with no side effects evident. I am finally turning the page on this flare and down to 4 or less poops a day, all shortly after waking up. I am still healing and I am hoping I'll achieve the ever elusive remission that I could never achieve with the ASA5's.
Lymphoma concern level: Very little. I have a greater chance of dying in a car crash then I do of getting Lymphoma.
Posted 3/14/2013 1:25 AM (GMT 0)
I was on Imuran, 125mg I believe. I was unable to get off Prednisone without flaring so my GI suggested Imuran as the next step.

I was only on it for about 2 months and it started causing some issues with my pancreas. I was getting pain in the area of the pancreas. I stopped the Imuran for a few days and the pain went away, so my GI said I should stop taking it. 

But it did actually seem to be helping me and I was feelling better, UC-wise, while on it.  It did make me feel pretty tired soon after I took it, but I took it at night so that didn't matter too much. I made sure to take it with food to lessen the possiblity of upset stomach.

I wasn't really too worried about lymphoma risk. My doctor told me it was 4 in 10,000 chance - not very high.  You have much higher risk of dying in many, many other ways than of this happening.

Posted 3/14/2013 1:48 AM (GMT 0)
I started Imuran because I had been on prednisone for quite some time with little improvement. I started with 75 mgs of Imuran and managed to taper off the Pred. Maintained for about 4 weeks then flared again. My doc doubled my Imuran and put me back on Pred. Once things evened out, I started a very slow Pred taper. I've been Pred free since Jan. 30 and while I do still have blood, I am better than I have been in a very long time!
Posted 3/15/2013 1:31 AM (GMT 0)
Reason: steroid dependency
Duration: 5 months
Satisfaction level: moderate
Lymphoma concern level: high, but I've decided it was well worth the small risk

I was on Imuran for 5 months after my initial diagnosis early last year. I was is in really poor shape (hospital-ridden, 90 lbs and unable to eat) and unable to taper my pred, so I was put on Remicade and 75 mg imuran (Imuran helps prevent the development of antibodies to the Remicade). I am within the 18-24 age range and am taking Remicade, so I know I was at a relatively higher risk for lymphoma, but it was so worth it! I've been in remission since starting the two.

Unfortunately...last October my hair started falling out like crazy and my GI thought it was the Imuran, so I went off it. My hair has stopped falling out and I am still in remission on Remicade alone.

My vote is take the Imuran. Nothing is worse than pred and I would take anything (almost) to stay off it, as the side effects and risks are far worse.
Posted 3/15/2013 12:54 PM (GMT 0)

Reason:  I was in a 4 year long flare up and had tried everything else (pred, rectals, entocourt, foams, diet mod, gluten free, scd, homemade kefir, 4 kinds of probiotics, all kinds of alt stuff people around here do like boswellia, slippery elm, etc etc).

Duration:  I started June 2012 on 50 mg., and my gi had me do a short 6 week course of pred with it as a bridge, as imuran can take 3 mos to kick in.  Once i went off pred, i had some symptoms and went on to 100 mg.

satisfaction level: VERY.  I am pretty much in remission.  I still do lialda and rowasa aboput 1-2x a week.  i have about 3x solid bm a day and i see faint blood in a formed stool about 1x a week if that, so then ill do a rowasa.  In the beginning i felt a little nauseaus but it went away, now i feel really really good.  maybe a bit tired at the end of the day, like i will just completely lose my energy, but that could be due to being 40 with 2 teenagers, husband, full time job and a part time job!

lymphoma concern:  not really concerned.  heres how i rationalize it.... if i were not on imuran and in a constant state of inflammation i would be at increased risk of colon ca...i get constant bloodwork to moniter.....there are risks to everything, and i think the risk was more for younger males who were on a biologic as well.....I can stop anytime at all, if i want to.....there are new frugs coming out and new research all the time, why shouldnt i take a medication that increases the quality of my life TODAY in the meantime...

my opinion: it may be worth a try, you can stop it at anytime....

you may want to do a search for posts from i think his name was my uc or something like that.  he's a dentist and wrote alot about how imuran helped him. 

i have been feeling so good on imuran that im barely around here recently becaseu im busy with life and feeling good!  constantly trying different stuff is mentally exhausting and takes alot of time.

good luck!

Posted 3/15/2013 1:10 PM (GMT 0)
I took 6MP for over two years, never had a side effect. The doses for both 6MP and Imuran are much much lower than for cancer patients. They are both considered safe drugs for UC. Frankly I would be far more fearful of Remicade. There's a lot less research on its long term side effects.

Sue
Posted 3/15/2013 4:28 PM (GMT 0)
I am on Prograf (Tacrolimus), which my doc told me the better/newer version of Imuran. Imuran takes 3-6 months to be effective for UC, and I didn't have the time (for me it was either surgery or Prograf - oral capsule, Remicade - infusion), I didn't know this but Prograf success ratio for remission is 80-90%. If this fails next step is surgery!

Reason: flared as they decreased my steroid
Duration: 8 months
Satisfaction level: Very satisfied (I feel like I am old self, no blood, no mucs...wow its like magic)
Lymphoma concern level: high, so I have time now to think which surgery is best for me, in case this fails. It gave me time and life back to just to go on until this fails. There is Remicade, but my hairs falling off. I am scared of infections (I live in a big big city...wear masks in a city during flu season.) I dont want to get cancer so I am thinking about surgery. This medicine gave me time, which I am greatful about.
Posted 3/15/2013 5:59 PM (GMT 0)
I flared a second time six weeks after tapering off pred and one month after dropping my asacol to 2400 from 4800 (1 month) My doc was immediately gunning for 6 mp. saying many people can't maintain on Asacol. Taking 6 mp and knocking out my overactive immune system seemed more convenient for him than me giving Asacol another try. (I was a problem newbie, always calling, upset, etc...)

After looking at the side effects -- from cancer to fatigue, I decided to get another doctor. He was supportive of my decision to give asacol another try, and it did work the second time, but only because I knew how to manage my disease better. I think people that are new to UC are vulnerable to being put on stronger meds that make it easier for the doctor to manage you.

But then I realize that no matter how much you know about your disease, you may still only be able to respond to stronger drugs or surgery.
Posted 3/15/2013 6:52 PM (GMT 0)
I have been on 125 mg of the Azathioprine (Imuran) for almost 10 years. It has made my flares less often. I've had no problems with it except for an occasional anemia or leukopenia. It does have a bone-marrow suppression activity. Nothing severe, though.
I have a real fear of prednisone, because I do not handle that drug well. I would almost rather have "the surgery" than go back on steroids, again.
Posted 3/15/2013 7:41 PM (GMT 0)
Interesting mix of replies. There does seem to be happy HUMIRA customers although it seems discussed interchangeably with MP6. The rest seem to have to adjust and struggle with it or stack more items like remicade so the beat goes on where he was painting a certainty of a rose garden awaiting me.
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