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Immunosuppressants?

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Ulcerative Colitis
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Posted 2/13/2018 1:37 PM (GMT 0)
Hello all!

Despite a symptom-free 6 weeks on a short course of prednisolone, I'm flaring once again.

I came off the steroids 5 days ago, then this morning out of nowhere, I had urgency and three trips to the bathroom with more blood than I've ever had before.

My IBD nurse has informed me that the next step is immunosuppressants, which is terrifying me sad

What is everyone's experiences with immunosuppressants? This is brand new territory for me, and the fact that the colitis comes back worse each time I think I've achieved remission, I'm feeling a bit scared and alone :/

I don't know anybody else with this condition, and people around me keep offering the usual suggestions of "eat healthy" and "minimise stress". I know they mean well, but despite doing both those things anyway, the colitis doesn't seem to back down no matter what I try sad I'm so frustrated with my body right now!
Posted 2/13/2018 1:43 PM (GMT 0)
please ask whomever is in charge of your care over there for some butt meds > i.e., rectal enemas and suppositories -

try those first -
Posted 2/13/2018 1:46 PM (GMT 0)
and tell them while you're at it that they are idiots not to have given them to you already - or give me their contact info and i'll happily do it for you -
Posted 2/13/2018 1:54 PM (GMT 0)
I've been on immunosuppressants (6mp and Remicade) since 2012 without a single side effect from them. I have achieved remission, and had a better quality of life because of them. Yes, we're all a bit scared at the prospect of starting new classes of medications, myself included. What helped me the most when considering them was looking at the actual risks versus benefits of immunosuppressants. The Crohn's and Colitis Foundation of America has some good information on it:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

UC involves a strong immune system response that causes inflammation within our large intestine. Our doctors first try mild, topical anti-inflammatory medications like your Octasa. When that is not enough than the next step is to slightly weaken the immune system with immunosuppressants and often when combined with anti-inflammatory meds that is enough to achieve a remission and normal quality of life. Regarding immunsuppression, it only takes your immune system down slightly there's no reason to be a germophobe or roll around in a giant bubble (bubble boy/girl) lol. At most, you might get sick one more time per year (cold or flu), and many are not any more sick than normal. Side effects are pretty rare but serious for immunosuppressants, so there is some risk and it is important to understand what it is and the odds.

In the end, quality of life is what we all want and these stronger medications have 65-70% odds of improving your UC symptoms with less than 1% odds of the bad side effects most of us worry about. For the majority, benefits far outweigh the risks.
Posted 2/13/2018 1:56 PM (GMT 0)
I tried enemas and suppositories and at first when I was diagnosed they were working fine, but then my body just seemed to reject them completely :/ it was weird, whenever I put a suppository in at night I'd poop it out again at about 6am and none of it had been absorbed. That and it seemed to make my colitis worse!

So that's why I've been put on oral meds.
Posted 2/13/2018 2:06 PM (GMT 0)
Thanks iPoop! I feel a bit more reassured smile I'm to start the immunosuppressants tomorrow with another steroid course in the mean time, and I'm continuing with the octasa.

The things I'm scared of are the possible side effects and the idea of catching every illness going! But I suppose it's better than being terrified I'm going to bleed out every time I need the bathroom...

I've read in the leaflet I was given that it can take 3-6 months for them to start working properly. I am a little apprehensive of how they'll affect me because during my brief period of remission, I took a big life step and purchased my first home which I'll be moving into in the next couple of months! So stressful times ahead on top of all this! Good stress though smile

Also, I used to think my immune system was pretty awesome until it decided to start beating up my rectum, but there you go :D
Posted 2/13/2018 2:14 PM (GMT 0)

Tivs1992 said...
I tried enemas and suppositories and at first when I was diagnosed they were working fine, but then my body just seemed to reject them completely :/ it was weird, whenever I put a suppository in at night I'd poop it out again at about 6am and none of it had been absorbed. That and it seemed to make my colitis worse!

So that's why I've been put on oral meds.


most folks typically use enemas at nite and suppositories in the morning - tell me about your experience with the enemas - how often did you use them and for how long -

and my apologies for assuming they neglected to offer them - unfortunately is happens too often -


some folks do have a reaction to mesalamines but it's not common - but if the oral is ok, so should the rectal - in rare cases, the sulfites in the enema can also cause issues -
Posted 2/13/2018 2:29 PM (GMT 0)
I've mostly been on asacol in the past. I had them initially after I was first diagnosed. They were the miracle meds for me at the time and I was told to come off them after 6 weeks (which was a big mistake).

I had a second flare after 2 weeks of remission, then I was given a sulfolax enema which I took for nearly a week once a day. Besides injuring myself a few times with it (I have horrendous balance and couldn't get used to it), I pooped that out anyway a few hours later and then I was told to come off it because the enema went past where the disease was the most troublesome, which is right at the bottom of the rectum. Neither did it help the colitis at all.

Then I was put back on the asacol, and my body stopped absorbing it, which was frustrating because it had worked so well in the past. And that was when I went on the octasa.
Posted 2/13/2018 2:31 PM (GMT 0)
Congrats on the house! Life stress is always around us, we try to limit it whenever we can but work, life, kids, big life changes and other things can stress us out at times.

Likely they are talking azathioprine/imuran or 6mp, and yes those take on-average 3 months to reach ideal therapeutic (healing) effect within our bodies. A pill you take today takes 6-weeks to have an effect on your body. They initially start you on a low dose, wait a number of weeks and look at your bloodwork, and then increase the dose which then takes another 6-weeks to have an impact.

Humira/remicade works in about 6 weeks or less time. Really depends how bad your symptoms are and whether they'd approve it without first trying imuran/aza/6mp.
Posted 2/13/2018 2:39 PM (GMT 0)
Thank you smile I'm trying not to let it stop me from living my life, as hard as that is at times. Especially right now :/

Azathioprine was one of the drugs they were talking about yes. I'm waiting for a call back from my IBD nurse for me to give my consent to start treatment. I need more blood work doing tomorrow as well before I officially start them. I had the initial tests to see if immunosuppressants were suitable for me 6 weeks ago in case the steroids didn't work and everything has come back ok.

I don't know why this is scaring me so much!
Posted 2/13/2018 3:01 PM (GMT 0)
There has been a change of plan!

I'm to have a flexible sigmoidoscopy within the next three days to check the disease again because my symptoms are now way worse than they were initially when I was first diagnosed. This should be fun!

They're going to start me on azathioprine after that.
Posted 2/13/2018 3:12 PM (GMT 0)
just curious - how long have you been using the primrose oil ?

fyi - supplements can have side effects just like pharma meds -
Posted 2/13/2018 3:19 PM (GMT 0)
I've been on the primrose oil since December 2016. I take it to control premenstrual dysphoric disorder. My doctors know this and haven't said anything about it :/
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