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Finished Uceris foam course, symptoms now coming back...terrified of Imuran

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Ulcerative Colitis
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Posted 7/6/2018 6:40 PM (GMT 0)
*Sigh*

In mid-April I started experiencing flareup symptoms after being in remission for 2.5 years with Humira. Got tested twice for c.diff, didn't have it. Got my Humira levels checked, levels are fine, no antibody development.

At my request I went on Uceris foam twice a day for 2 weeks. It was awesome, it worked right away, but I knew it was only a bandaid. After the 2 weeks were up, I stayed on it for another month at a once a day dose because my doctor wanted me to be stable in case we needed to add a new med and it might take a while to kick in. I just finished the Uceris two nights ago. I'm already seeing mucus again and I can tell my frequency is about to start climbing.

Doctor mentioned Imuran last time I was in (this was a month ago and I'm due to see him again on the 18th). I remember him being hesitant to have me try it when I first started seeing him, but now it sounds like he might recommend it.

It's already scary enough being on Humira, but Imuran too? Something that used to be used primarily for chemo? I'm scared of being extremely vulnerable to illnesses, further increasing my risk for serious long-term side effects, and...I cannot handle nausea and vomiting whatsoever. I'm an emetophobe. I would think nausea is one of the most common side effects of Imuran. I wouldn't be able to go to work, that's for sure, and I hear that side effect can last for months and/or be fine at first but then suddenly start up.

I'm really scared that this is my next possible step. What would you do if you were me? Is it worth trying to make a drastic diet change to see if it would help keep me in remission? The options that are left feel impossible to me. Sorry for the whining. cry
Posted 7/6/2018 6:58 PM (GMT 0)
Is Humira the only medication that you're currently on? One simple approach is to take Humira, Lialda, and Rowasa daily and see if that's enough. Combination therapy is often better results then just taking one medication.

As far as the odds of nausea as a side effect. There's 80% odds you will NOT experience a nausea when starting
mercacaptopurine/6mp/imuran/azathioprine, as only 20% do experience nausea when starting it. Those who do experience nausea, it can last 3-4 weeks. I never experienced it, myself, but have read stories here of it. Would starting the medication concurrently with an anti-nausea be sufficient or would that not at all work for you?
Posted 7/6/2018 7:02 PM (GMT 0)
Just out of curiosity, are you taking any form of mesalamine?

I took Imuran but was not able to tolerate it (severe allergy, nothing to do with nausea or vomiting). The thing is, they will monitor you carefully when you take it to make sure you are not having any serious side-effects. Also, the dose they give you for U.C. is pretty low, just enough to take the edge off your overactive immune system.
Posted 7/6/2018 8:54 PM (GMT 0)
I agree with the others. How about rowasa? I don't think imuran is a bad idea, but I do understand it's difficult to accept the potential side effects of any new daily medication, even if they are rare. I wouldn't expect to have any crazy issues with immunity or infection from imuran, most people don't, but you never know and you're smart to question. How about using the uceris foam longer? Maybe every other day, or every few days? Would that keep you in check?

I did well on 6mp personally. Didn't have many side effects, suffered from some fatigue, but i always do, so I can't be sure it was related. Diet never helped me, but if you've had luck with it in the past, of course, I would go that route before drugs. I personally didn't believe diet would help me because it hadn't when I tried it many times prior, and I didn't want to waste away into the depths of severe UC. You know what works for you. If you have a diet plan that's worked, you should try it!
Posted 7/6/2018 10:08 PM (GMT 0)
You could try Entyevo, but it is not as convenient as the Humira.
Posted 7/8/2018 3:24 AM (GMT 0)

iPoop said...
Is Humira the only medication that you're currently on? One simple approach is to take Humira, Lialda, and Rowasa daily and see if that's enough. Combination therapy is often better results then just taking one medication.

As far as the odds of nausea as a side effect. There's 80% odds you will NOT experience a nausea when starting
mercacaptopurine/6mp/imuran/azathioprine, as only 20% do experience nausea when starting it. Those who do experience nausea, it can last 3-4 weeks. I never experienced it, myself, but have read stories here of it. Would starting the medication concurrently with an anti-nausea be sufficient or would that not at all work for you?

Yes, Humira is the only UC med I'm currently on. I've been on Lialda before and it didn't seem to do anything for me, but that's an interesting approach since it would be adding the Rowasa, too. If it works, do you stay on the Rowasa long term, daily?

That's good that 80% of people don't experience the nausea. Umm, I'm not sure if taking it with an anti-nausea med would work for me or not. I'd have to try.
Posted 7/8/2018 3:33 AM (GMT 0)

C_G_K said...
Just out of curiosity, are you taking any form of mesalamine?

I took Imuran but was not able to tolerate it (severe allergy, nothing to do with nausea or vomiting). The thing is, they will monitor you carefully when you take it to make sure you are not having any serious side-effects. Also, the dose they give you for U.C. is pretty low, just enough to take the edge off your overactive immune system.

I am not. I was on Lialda for quite a while towards the beginning of my diagnosis. The doctor sort of came to the conclusion that it wasn't doing the trick for me. But it's interesting that you and iPoop both mentioned mesalamines.

That is really reassuring about the Imuran, thank you.
Posted 7/8/2018 3:56 AM (GMT 0)

notsosicklygirl said...
I agree with the others. How about rowasa? I don't think imuran is a bad idea, but I do understand it's difficult to accept the potential side effects of any new daily medication, even if they are rare. I wouldn't expect to have any crazy issues with immunity or infection from imuran, most people don't, but you never know and you're smart to question. How about using the uceris foam longer? Maybe every other day, or every few days? Would that keep you in check?

I did well on 6mp personally. Didn't have many side effects, suffered from some fatigue, but i always do, so I can't be sure it was related. Diet never helped me, but if you've had luck with it in the past, of course, I would go that route before drugs. I personally didn't believe diet would help me because it hadn't when I tried it many times prior, and I didn't want to waste away into the depths of severe UC. You know what works for you. If you have a diet plan that's worked, you should try it!

Would the Rowasa be a permanent addition? I'm just wondering because I know a lot of people stay on enemas long-term and it works for them, but if I had to do that every day or even every other day indefinitely, I'd probably honestly opt for Imuran. But that might not be wise, I don't know.

If I can keep using the foam, great, but I'm thinking he wanted to limit the amount of time I was on it because it's a steroid. Every few days might be okay, but I wonder if the flare would just keep coming back every time I tried to get off of it.

I haven't tried any diets except for low-residue right after I was diagnosed. It didn't seem to help, but I probably need to give some other diets a chance. I'm terrible with eating well, so it would be a major life change.

Thank you for the input!
Posted 7/8/2018 4:08 AM (GMT 0)

DBwithUC said...
You could try Entyevo, but it is not as convenient as the Humira.

He did mention that med. At least the infusions are much shorter than remicade. I'd be okay switching to it if it didn't have serious side effects (not any more than Humira I suppose) and it worked.
Posted 7/8/2018 9:37 PM (GMT 0)
First thing is getting off of the pred and stabilizing. Yes the lialda anc enemas could be longterm but then again they might not be needed indefinitely. Stabilize without pred, try tapering off and see how you do.
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