Waiting to start Humira

A low dose of pred wouldn't do a thing for me in a bad flare.

Do you feel as though you are passing enough stool (in any form) based on how much you are eating? Our colons swell with inflammation and if the inflammation would get too bad I could see how it could really slow the amount of stool you can pass.

What does the doc say they would do for you in the hospital? I have only ever been hospitalized so they could give me IV steroids when I was in a really bad flare. How did you fail steroids in the hospital before?

Hi Cathbrighton, prednisolone doesn't work for me, even if it's administered intravenously (IV), but Clipper (beclamethasone diproprionate) does. I tried Cortiment (budesonide) but that didn't work either. I still get some steroid side effects with Clipper but at least it's just 5mg a day, and it's not as bad as pred rage. You may find it works better for you as it releases in the bowel.

Do you take mesalazine tablets daily? I was just wondering because I can only tolerate 3 Mezavant tablets a day. If I take more than this I vomit. No idea why but I have a limit to how much I can take.

Have you had blood tests taken recently? Are they normal?

Good luck with trying Humira. As per my recent post on another thread it worked well for me for about 5 years. I still had one or two minor flares during this time but nothing long lasting, and had a solid 2 years of blissful normality. Like I said to the other poster, you don't have to stay on Humira if you try it and decide it's not for you. Like many people I was scared to try 'harder drugs' but I found that I had no noticeable side effects with Humira compared with lots of problems with Aza / 6MP.

I don't think it's true that the higher up the drug ladder you go the more toxic and dangerous the drug. It's more a case of the higher you go the more expensive the drug. I really didn't want to take Azathioprine but had to try it before I could try biologics.

Hello and thanks to you all.

This is all very helpful! I am struggling a lot with dehydration in spite of drinking tons of water and green tea. I have a bad headache when on the toilet passing the blood. Stool movements when they happen are not too bad but definitely less. I am not eating much (for me) - just from the list of chicken, spinach, salmon, avocado and stewed apple. The diet seems to be helping with bloating etc. UCYousee - I have tried clipper and busonide but with no success in the past. IV steroids didn't work in hospital last time - I assume because I have taken them all my life and they just don't work as well. The GI said a low dose might have some effect at least and I don't feel any worse on them. I take the point about being on a drip for hydration. Interesting that passing stools might be down to the inflammation swelling the colon. That sounds possible because I really think the inflammation is sky high - lots of back ache etc. I am hoping to start Humira next week so let's see if it starts to help. I think I will try drinking more as the dehydration is really bad ...

Thanks guys - I so appreciate the help. Brilliant support forum over the many years I've been needing it.
Collective healing to our colons.

Cxxx

Oh thanks UCyousee. I shall try that. I take a bit of chicken broth to help with my salts, but maybe something more targeted would help before I start the biologics. I'm at the stage of thinking remicade might be faster than humira. I certainly cannot wait beyond this week to start .... crikey the inflammation is terrible. Just staying in bed at the moment - totally non functional.

Just praying for relief ...

Thanks all - what a horrible disease.

Thanks for that crumb of hope Mike! Cannot wait til I feel better .... Hope you stay well!

Catherine

Hope the Humira works as well for you as it does for me.

Personally I had no physical reaction to my loading dose of entyvio but that night I felt stronger. Can’t really explain it except I was so weakened by that time by weight loss and the illness itself that the input of feeling strong was invigorating. Turned out I would get into remission— so I really feel that those initial feelings can be a harbinger for what’s to come.

Hoping your “calming” continues. 🤞😀

Hi. Sorry to hear you are having such a tough time. How high is your CRP? I thought I would “tough things out in June waiting for the Humira to kick in. Sadly, the Humira as a total bust. And things worsened. I had terrible nausea and vomiting, and can relate to needing to vomit while on toilet. I drank gallons and gallons of water, but ended up making very little urine because the water was constantly flushing through my gut. Eventually ended up in hospital for 8 days with a starting CRP of 90. I suggest you get your CRP checked before your situation gets out of hand. Best of luck.

Hi Cath. I was rescued by iV methyl prednisolone and 200 mg/day of Imuran. Once the rescue drove the inflammation down, I started remicade Biologic at 10mg/kg body weight. Now tapering off oral prednisone. Time will soon tell if the long term maintenance medication can keep this “Beast in its cage.”