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Likely starting Humira

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Posted 8/26/2020 8:18 PM (GMT 0)
Hi,

Not responding as hoped, 24 days into 40 mgs of pred on a very fast/aggressive flare (by the way, my opinion, brought on by a course of Levaquin after passing a kidney stone, random, absolutely no history at all).

I'm "better" but not "what I should be better" after almost a month,,,knowing every flare seems to take longer / more pred to resolve. Thoughts here? Still morning clustering for about 2-3 hours (esp if I treat self to coffee) and more than likely quick movement after eating lunch. As always, even bad flare, by evening I feel 99.9% normal. So weird.

I understand there is a new injection / delivery system that is not as cumbersome as previous - having to keep injector refrigerated etc. Anyone have experience here - and also what to expect starting the process (TB test, have to go to an infusion center or similar for first use vs doc office?) And what has the "average" response time been toward improvement. Also did you totally taper pred BEFORE heading into Humira or cross over to achieve remission.

THX! Everyone be well and take care of yourselves.

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51 yo female, dx 16 years, 2 major flares, minor/antibiotics, Lialda maxed out, pro b, supplements, 40 pred now
Posted 8/26/2020 10:17 PM (GMT 0)
TP, I went from Remicade to Humira so I can't give input on how long it takes to kick in. I've seen posts say they could tell after the loading doses or some have said it took a little longer.

I am not aware of the design of the pen being changed. The only change I am aware of it is it now citrate free & no longer stings! Boy, that's a good thing because it did sting, lol. I had my loading doses at my drs office & was shown how to do it. In all honesty I didn't have a problem. I injected my thighs switching from one to the other. I would pinch up some skin & inject. I did once in awhile have a drop show up on my leg, very small amount & my dr assured me that was fine. I never could get up the courage to inject myself in my stomach. Back then I had a big phobia of needles too.

I would think your dr would start you as soon as he gets approval from your insurance. Mine was handled through a specialty pharmacy & delivered to my door in a container with cold packs. Be sure to go to Humira's website & see about getting assistance with your co-pay too.

Good luck.
Posted 8/26/2020 10:46 PM (GMT 0)
I’ve been on Humira almost 3 years. I had my loading doses at the end of October while I was on approximately 10mg of prednisone. I did a slow taper off pred and was done by the end of December. I was basically fine by that point with a few ‘issues’ now and then (that the ibd nurse said was normal as it takes some time for your intestines to be totally healed)
I’m also not aware of any design changes such as not having to keep Humira refrigerated. That would be nice smile
I’m in Canada and I’ve asked about the citrate free version, but according to my GI dr, it hasn’t been approved for use in Canada =(
Posted 8/26/2020 10:51 PM (GMT 0)
Also, I did a TB test prior to starting Humira as well as made sure I was ‘up to date’ on any live vaccines.
I did my loading doses in an office that was specifically for Humira instruction, with a nurse that worked there. My GI dr is in Vancouver (~1-1.5 hours away depending on traffic) and this clinic was local
Posted 9/3/2020 7:11 PM (GMT 0)
Hi again, yes I think the only change was removing "citrate" or similar from the formula, seemed to be an issue? Still waiting on Sep 29 appointment (flare , END OF JULY!) to evaluate. Took me from 40 to 30 on pred but still morning issues, so I think we're "off on the road to HUMIRA!!!" (Old Bob Hope / Bing Crosby movies).

Otherwise I'm GREAT all day, just morning clustering still.....so frustrating!

So - for anyone interested, I'm working with a naturo-path who uses products from Pure (People united reaching everyone) Not advertising, but I really think the following has helped if you care: Pure sulfur capsules; Noni juice (OMG this tastes like death but one shot of 1-2 ounces every am/pm); store bought Kefir as a base for smoothies, and "greens" from the PURE site. I can't do almost any veggies without suffering right now so need the veggie aspect.

Will post separately re: colloidal silver,,,,,HIGHLY recommended by 3 of my granola friends but I am super wary about this...

Be well!
Posted 9/7/2020 3:09 PM (GMT 0)
I’ve been on Humira for about 12 weeks now. Inflectra didn’t work for me as I reacted during my second infusion. I had finished my prednisone taper by the time I started Humira. I noticed the slightest change after the loading doses but nothing huge. At the moment I range from feeling perfectly good to not so good without any correlation to when I take humira. I can confirm that the “burning free” version is not available in Canada yet. Important to mention that I just got my calprotectin back and I went from 2545 to 125 while on Humira and my CRP is 1.7. Also, worth noting, I eat everything. I got annoyed with the fact that I was in pain even when eating the so called ok food. Thought if I’m going to be in pain I may as well eat what I want. Recently started THC & CBD oil, looking into how it may or may not improve things. I’m have a better sleep so far.
Posted 9/7/2020 4:13 PM (GMT 0)
Is Humira your only option? I started Entyvio just over a week ago and have another loading dose on Thursday. Seems to me to be a safer option and just as effective. It does require an infusion though, but only every 8 weeks once loading is done.
Posted 9/15/2020 4:53 PM (GMT 0)
Hi again, per my 'virtual appointments' with the GI she is heading towards Humira but obv we will discuss options.

This has been my worst flare ever. Very picky. Will go days feeling really well and then BAM will be laid completely low and be housebound all day. Again, so frustrating when you're doing your best, following diet, etc.

(Methinks there is a menopausal component here as well ladies, I just feel awful beyond the GI issues.....adding prednisone to the mix of hot flashes and sleep issues anyway is legit.)

Will keep the team posted on this thread after Sep 29 appointment, thank you and stay well....

P
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