Think I’m flaring on remicade...

Hi ribbon,
I was on Remicade for over two years and I did well most of the time but I did have two flare up that resolved. I don't really have advice about the medication because it probably depends on wether you have antibodies or not. However, I know that we are in stressful times and that can aggravate our symptoms. I have been in a flare for two months and I am sure that stress is a contributing factor. I know this is hard but it will get better.

Why will it take 4-5 weeks to get the results of the tests? I had mine back within a couple weeks.

What dosage of remi are you on? Max is 10 mg/kg every 4 weeks and you can do lots of variations in between.

Can you use enemas to help get you stabilized?

It took me a year to feel like I am "normal". I had marked improvement but would still have random symptoms. After increasing to 10 mg /6 weeks I think I am finally in R-land. (I don't want to jinx things). For some people remicade works very fast ... and it did give me my life back pretty quickly. But for me it took a long time to stop having symptoms. I'm still not ready to taper off enemas though. It took me so long to get here I don't want to rock the boat.

Thanks everyone. I'm in the UK and for some reason it takes 6/7 weeks to get the results... I had it done over 2 weeks ago already. Bit of a joke really. I might just about find about before my next infusion but would be more useful to know sooner. I'm on the standard 5mg/kg every 8 weeks. I also take 6mp 25mg +100mg allopurinol every other day and mesalazine orally. I don't currently use rectal meds. I can't get on with salofalk foam as gives me awful cramps I can use budenofalk but obviously being a steroid it's not really a maintenance med.

So with me my symptoms always start off with just more pain mainly in morning. At the moment I'm getting some cramping and general discomfort, rumblings etc. I have one bm a day and no blood other than from a fissure which has been there over a year and caused by hard stools on both humira and remicade. I don't tend to bleed until things get really bad if you know what I mean... I have friends who bleed straight away and the rectal meds help them but generally rectal meds at least the steroid ones don't seem to help with my pain etc... Maybe they don't reach far up enough? Here in UK rectal meds seem much less commonly prescribed and only for flares rather than as maintenance.

I guess I have been quite stressed recently with the lockdown situation and covid plus my work has been quite stressful and dealing with pregnancy. Not an easy time but trying to chill as much as possible.

Stray dog symptoms mainly for last week or so mostly since Tuesday. But even before that I had occasional bad days... But for me a bad day at the moment is more pain/discomfort plus feeling like I need to go more often but without necessarily actually going. I know people have it much worse but I guess I just feel like I haven't had a proper remission in the 1.5 years I've been diagnosed and its been tough.

Also,the only thing that happened that could possibly have caused this was my prescription for mesalzine was delayed so i had 3 days where i had none to take and it seemed to start after that but I don’t know if such a short time would cause things to start going bad? I always felt mesalazine doesnt do much for me...

Post Edited (ribbon23) : 5/28/2020 2:40:06 AM (GMT-6)

Thanks flowersgal. Yes I believe it’s the same as they’re both budesonide. Thanks for the advice. I’ll try it but think I only have 2 weeks supply. I actually had 8 weeks between infusions 3 and 4 but seemed to generally be ok and just really not sure why this has kicked off 2 weeks into the 4th one like I could understand it if I was nearing my next dose...never tried the suppositories but could ask. Do you think they would help with cramping etc? Oh and thanks for the tip re Metamucil.

Yes things are quite tough right now!