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Posted 10/6/2020 4:22 PM (GMT 0)
Hi all,

51 yo female, DX 16 years ago, 3 major flares and this one did it. Had an out of the blue kidney stone (no history - I posted about this a month or 2 ago) and was placed on Levaquin afterwards and it blew me out. 2 months on 40 mg pred has not touched it. Flex sig last week shows limited inflammation (less than original dx!) but it is SEVERE.

Starting on Humira once approved by insurance, prob 2 weeks. Weaning off the pred at the same time.

Just looking for advise, reactions, pitfalls, hints, etc as I head into this new treatment option. Esp interested re: travel and how to keep meds at correct temp, I think there are dedicated kits for this? Any input is welcome.

Due to the severity of the short inflammation, doc predicts at LEAST 4 weeks before seeing improvement so that gives me a realistic timeline.

Thanks and stay well (also I don't know why sometimes this posts my signature line, sometimes doesn't)

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51 yo fem, dx 16 years ago, max Lialda, pro b, supplements, kefir, vitamins
Posted 10/6/2020 9:25 PM (GMT 0)
4 weeks will just be your 2 loading doses plus 1 regular dose. If 40 mg of pred for 2 months hasn't shown any improvement I have my doubts that you will see improvement from Humira in just 1 month.

Are you using any rectal meds? I think you would get the quickest response from hydrocortisone enemas since your inflammation is so limited. Then you could switch to mesalamine enemas.

Since you were on antibiotics I assume you were tested for c diff, correct? Even tested a couple times would probably be advisable since you had no response from the pred. Not unheard of to have false negatives.

Last time I flared badly a couple years ago 40 mg didn't do anything, but once I was bumped to 60 mg I had relief almost immediately.

What are your current symptoms?
Posted 10/7/2020 4:38 PM (GMT 0)
Hi CC,

Yes, re-starting steroid enemas to address localized inflammation. And have the mesalamine ones as well. Yes, tested for c diff, neg x2, just this week, full panel of fecal, TB, hepatitis, etc in prep for Humira. Antibiotics were late July (I know it can still show up).

We discussed popping up to 60 to see if I could get some relief (just to live in the mornings!) but she is in the camp of "there really is no proof that 60 beats 40 in all clinical trials". Everyone is different and if I'm heading into Humira anyway I want to taper off this (wonderful) poison. I'm 5'1 and my God, my cheeks! :--)

Still morning clustering, about 2 hours of on/off blood and gas, bm's, (actually pretty good Dr. Oz bm's most days!), urgency. I actually seem to be "starting to heal" but 2 months with extreme symptoms after 16 years of disease - I think we are definitely past prednisone as a treatment.

Again, looking for "tips" advice, etc on how people manage the Humira on injection, travel, side effects, etc. Many thanks to this group for being responsive and helpful and encouraging.

Again, everyone stay well in the onslaught of flu season, plus Covid, plus so many of us being immunosuppressed. I've had to to forego seeing my mom in VA / nursing home (94 Alzheimer's) and I'm struggling with that - we are all facing so many challenges.

THANKS!!!
Posted 10/8/2020 2:23 PM (GMT 0)
I went from Remicade to Humira & did not have any side effects. A nurse will show you how to inject yourself, it's very easy. I never injected my stomach, I did the injections in my thighs. She showed me how to pinch up a bit of skin & inject. What's great about Humira today is it's citrate free & does not sting like it did originally.

You should be able to travel with it, however, you will need cold packs to keep it cool. If I remember correctly the insert discusses traveling with it. I was also allowed to let the pen sit on the counter for 30 minutes to take the chill off before injecting it.

Good luck & I hope it works well for you.
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