Humira Bloodwork Results

Are you on weekly or bi-weekly injections? When I was on Humira I was moved to weekly and that induced remission. At the time it was based on the results of a colonscopy and they hadn't checked the levels. I had levels and anti-bodies checked after and they were within therapeutic levels.

Sara, I would certainly discuss weekly injections before kicking it to the curb. I have noticed UCer's seem to do much better with the weekly injections. While you think it may have been the Uceris that did the trick, it could have been the Humira starting to become more effective.

Good luck.

Wait, if my blood levels are at therapeutic levels though, wouldn't increasing the dose not do anything?

He didn't tell me how long to stay on it, just gave me it to "tie me over" until we found out if Humira was going to work. He gave me 6 month's worth of refills! I've been on Uceris 2 weeks now. I'm pretty much better now. 1-3 BMs, no blood, still have urgency. Some days are a little worse than others. Some days I still take a Tramadol but only one. Anyway, thank you. I guess I'll see what my GI says.

As an aside: I was just walking by the local bookstore and saw a children's book in the window display called "I Need a New Butt!" Did one of you guys write that?! Lol.

Post Edited (Sara14) : 1/15/2020 6:38:43 PM (GMT-7)

To see if the Humira is working... I also have osteoporosis now and dont want to be on any steroids. I was only put on Uceris to tie me over until we found out if Humira would work... I've never heard of Uceris being tapered so I'm not sure what you are recommending. It's pointless to continue with Humira if it isn't doing anything and I will only know when not on Uceris. I have basically been flaring for years now. Kinda over sitting around waiting. I would like to someday have a life again.

I see no reason to keep taking Uceris and not know what is working.

Yeah, sounds like you are in one of those classic U.C. dilemmas. I fractured a couple of ribs playing golf, so my osteoporosis is pretty bad, thanks to prednisone, and I haven't ever taken it chronically or even often. I'm going to see if I can do the quarterly Boniva infusions.
If your flares tend to be severe, hopefully you can find some kind of soft landing if you go off the Uceris and the Humira doesn't hold. Have you ever tried imuran?

I guess I'm confused. Why wouldn't I want to make sure it's not the Humira working so I can get off of it and get onto something else? I can just go right back on Uceris. Are you guys thinking it wouldn't work to go back on it? Uceris is just a band-aid anyway. I can't stay on it long-term, obviously.

Yes, Imuran made my life hell for a month in November-December. I felt like a cancer patient, so ill every single day. I regret wasting that month feeling so bad, my last time on prednisone and I didn't even get to enjoy feeling well because of Imuran.

I don't think if I'm at therapeutic levels (which I am...my GI wrote me about the results and said I was at a great level), he is going to switch me to weekly dosing. To me, that would make no sense, if I'm at good levels and seeing no benefit, why not move on to something else?

ld2186 said...
When I took Uceris tablets, my GI did have me taper off of them -- I did one day on and one day off (if I remember correctly, it's one 9mg pill and there's no way to break it so that was the only way to taper).
Also, my Humira blood concentration is pretty high. However, my GI still thought it was worth trying weekly dosing and thankfully weekly was enough to get me into a good spot. I can't remember what my level was at every 2 weeks, but at weekly I have a level of 22 and they just monitor to make sure I don't get into a dangerous level.
According to my doc, 40% of UC patients who take Humira need a weekly dose so it's not that uncommon to switch to weekly dosing.
Good luck to you!
Lisa

How often do you have to get it monitored? These Prometheus tests are not cheap.

Hi Sara, just want to say we are in a pretty similar position albeit I was on humira a lot longer than you. My trough levels are good, I have very low levels of antibodies but i’ve never been in a full remission on humira, I asked about switching to weekly and they said it probably wouldn’t make that much difference since my levels are good so i am being switched to remicade. In the meantime they wont give me anything for my flare I really hope things get sorted for you soon

I am thinking along the lines of what iPoop says. Stay on Uceris, heal, then take it slow and hopefully Humira will continue to work for you once you're off Uceris. If you rush to discontinue Uceris before you're healed, it will be harder to stay stable on Humira. I would take it slow. I know it's difficult to be patient... you want to know if Humira is working, and you probably want to move on to what works if it's not, but in reality, you've been struggling for a while, it's nice to be off prednisone and seeing progress - even if Uceris is in the picture. Give yourself some time to heal.

Check out this article: https://www.aarp.org/health/drugs-supplements/info-10-2012/fosamax-for-osteoporosis.html

"Clinical trials for bisphosphonate drugs have shown that they're only marginally effective at preventing hip fractures — even in high-risk postmenopausal women. For instance, when Merck, the manufacturer of Fosamax, says that the drug can reduce such fractures by more than 50 percent, it's referring to a study published in the Journal of the American Medical Association in 1998 that showed a small reduction in absolute risk among those taking Fosamax.
Of the thousands of women in the study group, 1.0 percent of those taking Fosamax experienced hip fractures, compared with 2.2 percent of those taking placebo (sugar pills). Because 1.0 percent is 44 percent of 2.2 percent, Merck is allowed to say that its drug reduces bone fractures by 56 percent. The same study reported that, among postmenopausal women without osteoporosis, the relative risk of hip fractures actually went up 84 percent with Fosamax treatment.

What's more, a systematic review of 33 studies of bisphosphonate drugs published last year by the highly respected Therapeutics Initiative found "no statistically significant reduction in hip or wrist fracture" in women with no previous fractures or vertebral compression — who make up the majority of women treated with bisphosphonates. In higher-risk women, the review found small reductions in absolute risk — 1 percent for hip fractures and 1.3 percent for wrist fractures, noting that even those statistics are based on "a potentially biased subset" of patients in the studies. Plus, neither the doctors who prescribe bisphosphonate drugs nor the companies that manufacturer them are able to say how long patients should be taking them. As the American College of Physicians puts it, "Evidence is insufficient to determine the appropriate duration of therapy."

Moreover, bisphonate drugs may have adverse side effects, such as:
•Musculoskeletal pain; gastrointestinal problems: ranging from heartburn, acid reflux and other relatively mild gastrointestinal events to, in rare cases, chronic inflammation and ulcerations.
•Spontaneous bone fractures; and jawbone deterioration."


I read a ton of other articles, too, and looked up user reviews of Fosamax. It got average ratings of about 2.5/10! That's horrible. A ton of people got pain so bad that they couldn't even walk. Anyway, hope you are happy with the results if you use Boniva.


Uceris is 10-20% absorbed systemically, according to a VA detailed write-up on budesonide that I found (pred is 92% for comparison). I don't want to be on it any longer than absolutely necessary due to the bone issue, and given that I have no idea if it is doing anything or if the Humira is, it makes sense to me to stop taking it and find out. I'll see what my doctor recommends though.

Sara
Humira failed me with a level of 19 and my doc mentioned that we could try weekIy but I decided to switch To Remicade because humira gave me crazy anxiety and insomnia . It may be worth a shot for a few months to see if you just need a higher level to get in remission . My Remicade level is 15 which is what works for me but lower levels are considered to be therapeutic . I also think you could have tried higher doses of Remicade to anti the low antibodies . Uceris didn’t work for me at all for a mild flare while on humira so I doubt it’s doing the heavy lifting here.