HealingWell
Search Close Search
☰

Emergency appointment today..

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/29/2016 7:30 AM (GMT 0)
Good morning all..!

So, I'm due my infliximab infusion tomorrow (my second 'real' one after my three loading doses). Things had been going well on that until 5/6 weeks ago - I was feeling great, happy, awake, two BMs a day, no blood etc. etc.. all the thing we aim for! Then, one evening after dinner, I got a gripey tummy, I put it down to a vegetable OD! The next morning, soft stool, urgency and mucus. That then carried on throughout the day, so I skipped lunch and dinner and just drank water. I've been trying to manage it, but I'm now up to 6-8 BMs a day, all soft, all urgent, all bloody with mucus, and I am exhausted again - totally shattered. I'm bloated, getting painful cramps (mid and lower abdomen) and wind strong enough to knock anyone within 50feet out! So I contacted the IBD team and one of the nurses has arranged an emergency appointment for me today, as she said the infliximab may be having less effect, and I may need to discuss my now 'limited options' - I haven't responded to anything for more than few months before a flare kicks off again!

I've also had awful sores up my nose, that's new (possibly unrelated?), and my breath is starting to smell again - probably one of the more embarrassing side effects, hell, aren't they all!

I have tried so many different meds, is it worth requesting a different biologic, or should I seriously be prepared to discuss surgery?
Nothing works for more than a few months, and having had too many courses of Pred over the last 18months, there's no way I want to go back on that..!

Thanks for reading/offering advice!
Posted 6/29/2016 9:18 AM (GMT 0)
Even if you have surgery, that is no guarantee of remission. Some people have surgery and only get a few months of relief before the Crohn's comes back. So either way, you need to discuss biologics. It could be that you have antibodies, or it could just be that you need to up the dose of Remicade or do it more frequently because it runs out more quickly. It also could just be a fluke and a flare. I wouldn't be too quick to discount Remi just yet. Mine didn't work as well so we doubled the dose and do the infusions every 6 weeks, and it worked a lot better.
Posted 6/29/2016 10:38 AM (GMT 0)
Thanks, scifigal2k, I'm hoping they will just make the infusions more frequent (they said they can't increase the dose..!), I'm open to giving it time to see if it begins working again - the symptoms at the moment are what I would experience at the very beginning of a flare, so generally I'd have a good while of this before it got really bad. I think they just want to discuss any future options as my last flare put me in hospital.

I'm hoping that it will all be good - I'm going in there feeling positive :)
Posted 6/30/2016 5:02 AM (GMT 0)
They should test your for infections. C diff, cmv....
As well as check remicade levels.

Sending my best wishes
Posted 7/1/2016 9:29 AM (GMT 0)
Hello! I saw my GI on Wednesday, he has requested an urgent scope before he decides what to do next, he said the drug level in my system during my blood tests in MAy was high, so I may just have stopped responding, but they have tested for antibodies. At my infusion yesterday I had a massive dose of IV steroids, the infliximab and iron, and for the first time ever it knocked me for 6! I was asleep all afternoon! Sadly I've still had blood and mucus this morning, and awful pain, bloating and wind last night.. We'll see what happens!
Posted 7/1/2016 2:15 PM (GMT 0)
I think it's worth trying to increase the frequency of Remicade first before giving up on it - pity you can't increase the dose as well. My GI did give me an option for doubling the dose, but it would have only been for 3 goes. In the end he went for increasing the frequency for 3 goes instead.

If Remicade has failed, I think it's worth trying Entyvio, but obviously it has to be your decision. When I had surgery Entyvio wasn't on the market then and I couldn't really hang on until it became available. But if you can get by without steroids, then you have some breathing room to experiment and try different drugs. You could ask about that IVIG treatment that U B Tough talks about? Also, my GI mentioned a treatment called adacolumn apharesis to me. Nothing came of it in the end, but it was mooted as a possibility at one point. As was an elemental diet (which I tried) and anti-MAP antibiotics (which I didn't).

There are treatments beyond the biologics, it's just whether you can find anyone willing to do them or not. And get the funding of course.

Best of luck, hope you can knock this flare-up on the head!
Posted 7/1/2016 2:45 PM (GMT 0)
I will push for Entyvio again before anything else, and look in to other non-biologic options.. I will defo look into IVIG, too..

I've always ended up needing steroids to curb a flare, which then comes back once I hit 20mg, so I'm trying as best I can this time not to go near the stuff - I may even just refuse it point blank!

:)
✚ New Topic ✚ Reply