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Humira Bloodwork Results

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Ulcerative Colitis
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Sara14
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Joined : Mar 2007
Posts : 6235
Posted 1/15/2020 9:00 AM (GMT -7)
No antibodies and my trough levels are good (14), so I guess it just doesn't work for me. Or maybe it's possibly working now, but that would be a huge coincidence that as soon as I got on Uceris, it just suddenly started working. I guess I need to stop the Uceris and see.
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Mrs. Brady
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Posts : 279
Posted 1/15/2020 9:10 AM (GMT -7)
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.
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Sara14
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Posted 1/15/2020 9:13 AM (GMT -7)
Bi-weekly. I'm 8.5 weeks in. I started feeling a lot better about a week ago, but that was about 5 days after starting Uceris, so I'm assuming it is from the Uceris. Thank you for the input. I guess I'll see what my GI says.
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straydog
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Posted 1/15/2020 9:30 AM (GMT -7)
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.
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Sara14
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Posted 1/15/2020 9:31 AM (GMT -7)
Thank you! That would be great. I will also stop taking the Uceris starting tomorrow and see what happens.
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Sara14
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Posted 1/15/2020 10:33 AM (GMT -7)
Wait, if my blood levels are at therapeutic levels though, wouldn't increasing the dose not do anything?
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iPoop
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Posted 1/15/2020 12:00 PM (GMT -7)
>Wait, if my blood levels are at therapeutic levels though, wouldn't increasing the dose not do anything?

Right. I do not think they would take you to weekly with good concentrations.

Hard to say, uceris or humira finally kicking in? You're 8.5 weeks into humira and it should be working effectively by now if it will work for you at all. How long are you supposed to be on the Uceris? I do not think I would kick Uceris until the full 8-week course was run. Maybe they are both working a little and given a few more weeks it'll be a bigger improvement.

If humira has failed you, then go to another class of biologics: stelara/entyvio/xeljanz.
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Sara14
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Posted 1/15/2020 12:39 PM (GMT -7)
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)

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C_G_K
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Posted 1/15/2020 6:12 PM (GMT -7)
Why would you stop the Uceris cold Turkey? Remission is the promised land, and once I get there, I don't cut anything cold turkey.
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Sara14
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Posted 1/15/2020 6:31 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.
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notsosicklygirl
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Posts : 17750
Posted 1/15/2020 9:52 PM (GMT -7)
I would be careful to stop the uceris personally. It seems too coincidental that you felt better when you got on uceris. I would give it some time, take it slow. If the levels are good, it's not likely a dose increase would help, but you don't want to rush and end up back at square one. Maybe hold steady for a few weeks and see how things progress. I hope you continue to feel well! Seems like improvement is on the horizon.
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C_G_K
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Posted 1/15/2020 11:17 PM (GMT -7)
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?
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ld2186
Regular Member
Joined : Aug 2018
Posts : 33
Posted 1/16/2020 4:57 AM (GMT -7)
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
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Sara14
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Posted 1/16/2020 7:36 AM (GMT -7)
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?
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Sara14
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Posted 1/16/2020 7:44 AM (GMT -7)

C_G_K said...
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?

That sucks. Have you looked into those osteoporosis meds? They have extremely scary side effects and I don't think they really even work. People get more fractures once going off of them. I was prescribed Fosamax and am not taking it. My osteoporosis was not that bad though on paper and I did a ton of research and found this physical therapist online who seems to be an expert in osteoporosis and she said the range I'm in can be reversed with just diet/calcium and Vit. D supplements and exercise. I still don't understand how or why I fractured my foot or if it was even related, but it makes no sense if it wasn't. Anyway, I'm scared to do anything now and running and hiking were my life. You can't even lie down for 30 minutes after swallowing Fosamax because it can be extremely bad for your esophagus! That's scary. Lots of GI side effects with those meds.
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Sara14
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Posts : 6235
Posted 1/16/2020 7:56 AM (GMT -7)

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.
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iPoop
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Joined : Aug 2012
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Posted 1/16/2020 8:02 AM (GMT -7)
>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?

Right now healing is paramount, you are making progress, do not rock the boat and risk upsetting things. Continue both the humira and the Uceris. The goal is to continue what is working until you hit a remission, sustain it for at least a couple months and then taper off of things like Uceris. It's seldom one medicine that gets us into a remission, but rather a combination of them that does.

As a generalization, uceris is only going to make small improvements (it's a pretty weak steroid). So, if you continue getting better and do achieve a remission then it is clearly the humira that is working (you're a severe case and a mild med will not give you a remission). If you have plateaued, more weeks and a month go by without any more improvemetns, then I would say the uceris was the reason for the slight improvement you got.

I know you are worrying about more bone loss. Uceris is 90% topical and that affect is pretty minimal.
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ribbon23
Regular Member
Joined : Nov 2018
Posts : 241
Posted 1/16/2020 8:13 AM (GMT -7)
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 sad I really hope things get sorted for you soon
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Sara14
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Joined : Mar 2007
Posts : 6235
Posted 1/16/2020 8:54 AM (GMT -7)
Thank you all for the advice and feedback. I'll see what my doctor says to do and then make a decision. I emailed him last night.

Ribbon -- Yes, I still can't believe they aren't giving you anything in the meantime! That's crazy. I had good levels of Remicade and had low antibodies but my GI said increasing the dose wouldn't do anything, so I was kind of in a similar boat with Remicade. It did help me for 9 weeks though. Lol. Not sure the $900sh I paid for the infusions was worth 2 months of remission...could have taken a nice vacation with that!
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notsosicklygirl
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Joined : Dec 2008
Posts : 17750
Posted 1/16/2020 9:00 AM (GMT -7)
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.
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C_G_K
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Joined : Dec 2006
Posts : 1414
Posted 1/16/2020 10:36 AM (GMT -7)

Sara14 said...

That sucks. Have you looked into those osteoporosis meds? They have extremely scary side effects and I don't think they really even work.

There is a risk in taking them, and a risk in not taking them. Because of my rib fractures (and the fact I want to continue to play golf without constantly worrying about my ribs), I think doing nothing is a bigger risk as my osteoporosis is now having tangible consequences, and not just theoretical ones.

Doing a Boniva infusion every 3 months seems better and more effective than doing monthly oral (proven out by studies). No worries about the esophagus. From my research, bisphosphonates have been proven to reduce fractures in most people. There is a tiny minority who have more fractures.

I totally agree with the advice that iPoop gave you. Let your body heal for a while before making changes.
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Sara14
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Posted 1/16/2020 10:48 AM (GMT -7)
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.
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Sara14
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Posted 1/16/2020 11:01 AM (GMT -7)
And Boniva can too cause esophagus side effects, just FYI...Inflammation and ulcers.
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countess18
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Posts : 421
Posted 1/16/2020 1:35 PM (GMT -7)
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.
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Sara14
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Posted 1/16/2020 2:45 PM (GMT -7)
Thank you, countess. That's helpful to know. I didn't take the Uceris today, so I'll find out soon what's working. My doctor did not give me that option to try Remi at higher doses since I had antibodies. I guess if I had pushed for it, I am sure he would have said that was fine, but I didn't want to wait more weeks/months for something my doctor didn't even suggest trying...however, now I've been waiting months anyway for the Humira... I honestly don't think I ever waited longer than maybe 4-5 days for Uceris to work in the past. I always just assumed it didn't work and went straight to pred (bad idea).
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