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Flare while taking Remicade

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Ulcerative Colitis
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Posted 1/14/2016 2:15 AM (GMT 0)
Hi,

Had my first UC flare in 2012, however it was not severe and was passing before any doctor could made the right diagnosis. In 2014 it hit me again, and this time there was no stopping, had to stop working, lots of blood loss and weight loss, finally hospital. There a doctor, whom I am still seeing made the UC diagnosis. We tried steroids for some time, but did not help much, so we went for Remicade and it worked perfectly, after three IVs I haven healthy again, could eat anything and get back to live. This lasted now for 18 months, I am still getting the Remicade every six weeks. However since November, where I had some work stress, symptoms are creeping back, blood, more BM per day. Doctor already confirmed that there is no antibodies in my blood and the Remicade level is fine, so he doesn't see why it is not working anymore. Especially the last three weeks were bad, I went to vacation on Hawaii, jetlag, more sports than usual, all this seem to have not been taken well by my body. Now back home, with 20 BMs per day with blood, on top of that a flue with fever and couging. I hope at least when the flue is gone and sleeping rhythm is back to normal again, the UC will ease a bit.

But I am a bit scared on what's next. How are your experiences with UC flares during Remicade treatment? Any hope that this will go away by itself and Remicade remain effective?

Anyway, thanks for listening!
Posted 1/14/2016 9:03 AM (GMT 0)
Maybe you could have picked up some sort of pathogen.

When I started remicade(October 6) it was instantly effective. A month later(November 4th) I started flaring pretty badly again. Had my third infusion two weeks later(November 15) that did nothing. A few weeks later I had an appointment with my doctor and he seemed baffled by my symptoms. I told him I thought maybe I picked something up and he thought it was possible too. Ran tests for cdiff which came back negative but started me on antibiotics(December 15) anyways.

A few days later I started improving then he bumped up my fourth infusion a bit. After that I felt even better but still urgency and around 6-7 bms a day, not solid. I hopped on a quick prednisone taper (December 28th) since I was going on vacation over New Years for a week and still wasnt comfortable where I was at. Started at just 20mg and within a few days was great. Been pretty good the last two weeks now. I taper down to 5mgs of pred tomorrow and also have my fifth infusion. With previous pred tapers my symptoms have always came back once I tapered down to 10mgs. So thinking antbiotics, remi and pred all have helped me out greatly cause just a month ago I was quite miserable.
Posted 1/14/2016 10:58 AM (GMT 0)
Hi RobertAt

You mention stress - I am emerging from a serious flare with Remicade, Pred and Azathioprine - making slow progress. If I look back my flare started with stress at work - it is so often the trigger. I have tried mindfulness, but maybe think about how you could manage it better once you are out of this flare. I reduced my hours at work, but somehow work always eats away at one. I figure that my colon is more important than a job! Good luck and really hope things start to settle soon.

Catherine
Posted 1/14/2016 11:11 AM (GMT 0)
Hi Rob

One thing I've noticed is that when someone with UC flares, they assume their current medication has stopped working and think they either need to up and meds or switch them. Don't get sucked into that mindset though - unless your body has developed antibodies to Remicade (which of course the doctors check for) then you're OK.

Emotional stress is a huge trigger for UC that many overlook, other people like me find diet has a massive impact too. Focus on overcoming the flare, try to alter your life as much as is humanly possible so you can heal) and you'll be over the hump in no time.

The only thing that concerns me is that you say you didn't respond that well to steroids - for most of us they're a fast-working bail-out treatment that can get you there fast. So medication-wise I'm not sure if you want to try again with steroids? When your flaring and the mucosal lining is damaged, you have a lot of bowel movements because your body doesn't like to keep passing stool over the affected area (sore, open, bloody) so it's pretty much trying to keep your colon free of poo for the time being. I did go through something similar myself not long after I was originally diagnosed and I found Predfoam enemas worked really well. They got me out of it completely within 4 days. So try that. You may need to stop eating for a few days though. Some people would disagree with this but I'm only suggested you do it for a few days and keep your water intake high. Water, tea of all kinds is fine, even with milk if you can tolerate it.

Going forward, you might need to tailor a remission strategy that's right for you - looking at diet, supplements, making life changes, etc.

Hope you make a fast recovery mate.

Kev

P.S. The pathogen thing is also a possibility that you could discuss with your doctor, no harm in getting some investigations done to rule it out.
Posted 1/14/2016 12:55 PM (GMT 0)
Have you talked with your doctor? If not, you probably should. Not only for the UC symptoms, but also because you have a fever and flu symptoms. With a compromised immune system you could be at risk for complications.

Hope that you feel better soon!
Posted 1/14/2016 8:30 PM (GMT 0)
Remicade can stop working, even where there are therapeutic levels in your system. You could try increased dosing-testing levels again before and after. You could switch biologics-but don't be shocked it the mechanism that was working (anti tnfA) will not resume the glorious remission you enjoyed. Another biologic, Entyvio, works differently, and is worth a shot-takes awhile to work tho. Don't mess around too long with 20BM's -you can easily dehydrate. Stay in touch with your GI. Best.
Posted 1/14/2016 9:43 PM (GMT 0)
Hi All,

Thanks for all of your advice!

My GI also mentioned the possibility of a pathogen infection causing or contributing to the symptoms. He wants to do a colonoscopy to find out, but we wanted to wait till the fever/flue gets better, so hopefully can do it next week. Also only after that he wanted to decide if the treatment will be changed or supplemented, he mentioned Imuran or Humira as options.

What is also new is that since a week, when the flu started, I have strong acne on some areas of my body.

about work: I reduced it after my diagnosis, but have increased work load in the recent months, because I felt safe. I guess that was a mistake, which I am not going to repeat if I get out of this flare. I also like mindfullness and will try to practice it more.

Regards, Robert
Posted 1/15/2016 4:50 AM (GMT 0)

RobertAt said...
Hi All,

Thanks for all of your advice!

My GI also mentioned the possibility of a pathogen infection causing or contributing to the symptoms. He wants to do a colonoscopy to find out, but we wanted to wait till the fever/flue gets better, so hopefully can do it next week. Also only after that he wanted to decide if the treatment will be changed or supplemented, he mentioned Imuran or Humira as options.

What is also new is that since a week, when the flu started, I have strong acne on some areas of my body.

about work: I reduced it after my diagnosis, but have increased work load in the recent months, because I felt safe. I guess that was a mistake, which I am not going to repeat if I get out of this flare. I also like mindfullness and will try to practice it more.

Regards, Robert

he wants a colonoscopy to check for pathogens? I would figure a simple stool sample would do the trick which is a lot easier than a colonoscopy. I'm not even sure if a colonoscopy can check for pathogens. Pathogens are a virus of sorts, I thought colonoscopies could basically just check for inflammation/polyps/cancer etc?

As said above, my doc thought maybe I had cdiff, it came back negative but he put me on flagyl anyways for 10 days. It definitely helped. We didn't have to keep going thru tons of tests to nail down exactly what I had caught. If you do have cdiff, seems like vancomycin is the drug of choice.

Also, adding Imuran is probably a good idea anyways. Seems like most of us on remicade take imuran too. They say it helps your body not build up antibodies to remicade as quickly. Imuran does take 2 to 3 months to start working.
Posted 2/4/2016 12:19 PM (GMT 0)
Hi All,

Just wanted to post a sign of life. Since my last post, the situation escalated, lost too much blood and spent the last two weeks in hospital, came back home today.

All tests for pathogens were negativ, they tested stool, but also took tissue sample during a "light" colonoscopy. But my Remicade blood level was pretty low. They gave me antibiotics, blood tranfusion and two shots of Remicade. Situation is improving, but far from over. Last shot of Remicade was only two days ago. My doctor wants to wait now till next week to judge if the upped Remicade dose alone is enough or if we add Imuran. He basically thinks that the added risk of infections due to two different immune-suppressing medicines should be taken only if really necessary. If we get the flare to stop with Remicade only, that's the preference, and I tend do agree.

Robert

PS: just want to say, I feel so lucky, having a good doctor, insurance that covers everything, a supportive family and work environment.
Posted 2/4/2016 12:37 PM (GMT 0)
pss - and of course all the kind, intelligent, knowledgeable, helpful, understanding, and above all, good looking folks at HW smilewinkgrin

hope you get back on course soon !
Posted 2/4/2016 3:41 PM (GMT 0)
Good luck to you. It sounds like a higher dose of remicade might be just what you need, and that's great. As for adding imuran, we have a lot of members on both meds and the majority do not have trouble with infections. Hopefully you do not need to add it, but if you do, it might not cause any problems so try to think positive.
Posted 2/4/2016 3:57 PM (GMT 0)
Thanks, that is good to hear, always nice to have another option up the sleeve. :)
Posted 2/4/2016 6:54 PM (GMT 0)
What is your albumin? What is your protein? I ask this because remicade is a protein based drug. If there is not adequate protein for remicade to work with it will end up in the toilet.

I would for sure add in the imuran. The risks associated with flaring are worse than risks of double immunosuppression. There are very good solid studies that are very well done that show anti-tnf combined with thiopurine (imuran,methotrexate...) are far more effective. In fact it was nearly doubled in efficacy!
It takes a bit of time for it to work, so they might want to do a steroid taper. I wold recommend budesinide mmx (brand Uceris) as it is released throughout the colon. It doesn't have the same effects as prednisone because it is less systemic. However, people do see faster relief with prednisone. You might also start with prednisone or both and than taper down the prednisone and than finish your taper with Uceris.

If your remicade levels are low than raising the dose is a good idea. Many of use have doubled our doses and or have gotten extra infusions and or increased dosing frequency.

Good luck
Posted 2/4/2016 8:08 PM (GMT 0)
Thanks, Dikid! I will check with my doctor again about the Imuran. about the time it takes to work, does it start slowly and fully kick in after three month, or first nothing and then suddenly kick in? Reason I am asking, with my current flare, it was like 2,5 month from first symptom to hospital. So if the Imuran has at least a bit of effect after a month, it might have still saved me from some trouble, if I started taking it with the first symptoms of the flare. And yes, I could now kick myself for not acting more decisive earlier.

about the Prednisone, yes, I am on that too, forgot to mention. The first week in hospital they injected me 75 mg/day, then 75 mg/day orally, now 50 mg. Side effects are heavy, so thanks for the info about Uceris/Budesinide, will ask my doctor. I found some info that it was approved by the EU under the name of Cortiment MMX end of 2014, but nothing about availability in my home country Austria.
Posted 2/4/2016 8:18 PM (GMT 0)
The imuran needs to build up to a therapeutic dose in your body and it can vary for different people. because I started it a few days after remicade I am not sure when it started helping me.

just to clarify, you are taking 50 mg oral prednisone?
if you take budesonide, make sure you get the mmx formulation for colonic release. entecort has very little released in the large intestine.
Posted 2/6/2016 10:32 AM (GMT 0)
Yes, 50 mg oral Prednisone. On now 63 kg body weight, down from healthy 72 two month ago. Hope to be able to reduce it soon, main side effects I feel are unrest and an insatable, biting appetite/hunger feeling.

The Remicade dose in your signature, to which IV dose does that translate? I had 400 mg every six weeks before.

Regards, Robert
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