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Humira...not convinced...
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Ulcerative Colitis
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3840
Posted 7/11/2017 10:18 PM (GMT 0)
I did my loading doses of Humira: 4 the first week, 2, two weeks later, and then my first "regular" dose two weeks later (a week ago Monday.)
My status had been: two or three well-formed stools most mornings, no blood.
The past few days have been 5 bms in the morning, last night one at bedtime, and several days I had blood on the TP. So yesterday I pulled out my old friends, the Cortenemas. As always for me, this morning after I used one, the blood is gone (admittedly I am talking minimal blood.) So I will keep using those for a bit.
I would wonder if the Humira is just not working; but also I was away with extended family last week, in a different part of the country, eating different things; and I almost always have symptoms when I am there. So... maybe I would be in full-blown, red toilet bowl flare if I weren't on the Humira? (lol)
I am being a patient patient. But... sheesh.
Richard in NY
Regular Member
Joined : Nov 2012
Posts : 208
Posted 7/11/2017 11:14 PM (GMT 0)
Ask your doc to check your blood levels. Because the absorption rate from subcutaneous injection varies a lot from person to person lots of people need the shot once a week instead of biweekly.
I was put on weekly dosing before I failed Humira and am now on Entyvio. Humira will work if your UC is primarily caused by TNF. If some other immune system component is doing the damage it won't.
hateuc
Veteran Member
Joined : Jun 2010
Posts : 2361
Posted 7/11/2017 11:43 PM (GMT 0)
Yep good ole rectal med friends. If the Humira isn't doing the trick...I wonder if Entyvio would be a better choice for your UC (although Humira seems more convenient) I wonder what your Dr. would say about
this development. Hope you will stay back on track with your ole friends.
B
Poppie
Veteran Member
Joined : Feb 2014
Posts : 2169
Posted 7/12/2017 2:33 AM (GMT 0)
That's interesting, it does not sound too positive at the moment, although I guess you might have to be more patient, things might change for the better.
I start Humira on Thursday and I wondered did you need a premed before taking Humira, or is it not necessary. Also, does it hurt like hell! that's what I have read.
gozalot
Regular Member
Joined : Mar 2017
Posts : 54
Posted 7/12/2017 3:09 AM (GMT 0)
I'm a couple shots ahead of you so that's around the 3rd month of Humira for me. This past week I've had no blood for 4 days in a row - which is huge progress for me. From what I've read this drug can take a good 3 months to work for IBD'ers and I'm starting to agree with this since it's about
that time frame for me. I'm also on 100 mg of 6-mp (works well with the Humira) and possibly upping dosage depending on results of bloodwork that was done today. I believe that since the humira is starting to really kick in, I'm now able to wean off the Pred and Colocort. I've managed to get down to 15 from 40 on the Pred, waiting another week before I taper the Colocort. Last month I failed at tapering the pred.
Just to give you an idea on what has happened with me - I thought it wasn't working for me and then it finally did.
good luck
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 7/12/2017 10:02 AM (GMT 0)
What were your daily bms before starting humira and now? Any improvement at all experienced in your UC symptoms?
If you've gotten an initial response then give it more time to work (maybe increase the interval) and you could add an immunomodulator (like 6MP or imuran for better response).
If you haven't gotten an initial response at this point (completion of loading doses) then you've failed it and need to discuss other options with your doctor.
Richard in NY
Regular Member
Joined : Nov 2012
Posts : 208
Posted 7/12/2017 10:45 AM (GMT 0)
There's no way of knowing if Humira or Entyvio is a better choice until you try one and see if it works. I think they usually try Humira first because it's cheaper and can be done at home.
Any improvement in symptoms for both is very slow because neither does anything directly to reduce inflammation. They both work by trying to stop the immune system attack on your GI track, in different ways.
The IBD specialist my GI referred me to is not a big fan of Humira because the dose that can be given by injection is so small compared to infusion and the meds given by infusion go directly into the bloodstream, so there's no variability in absorption as you see in subcutaneous injection. Humira still works for a lot of patients.
songlady
Veteran Member
Joined : Aug 2009
Posts : 3840
Posted 7/12/2017 1:17 PM (GMT 0)
Thanks, everyone.
iPoop: before starting Humira I was going 3 times most days, a little blood on the TP every two months or so and I'd do another round of Cortenemas. So this past week has definitely been worse.
I was thinking that after the loading doses I was better; maybe two poops each morning (a day or two of only one) but hard to tell if that was the medication or the hopefulness of starting something new, which I have found can always make things better temporarily!
I tried 6 mp a year ago and my liver enzymes went really high, even when the dose was reduced to very low (50 mg/day.) So that doesn't work for me.
Having traveled with the last dose, in the heat of the summer, I tried to keep it cool, but I suppose there is a chance it got overheated and was rendered inactive; so I will give it another dose or two before judging it not to work.
Poppie/Sam: I have not done a premed with the Humira. It does sting while administering it, for those 10 seconds, and for the rest of the day I can feel mild discomfort at the injection site; it feels more like a bug bite. (I am aware of it as my clothes rub the area but it's not a big deal.)
I have found the belly to be less painful than the thighs for the injections. Good luck, I hope it works for you!
I am on Humira rather than another biologic because this is what my insurance would cover. If I fail it, they will cover Remi, Simponi (in conjunction with the patient-assistance programs) Entyvio and Inflectra (I have not heard of Inflectra...?)
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 7/12/2017 1:55 PM (GMT 0)
Inflectra is a new, biosimilar of Remicade. Biosimilar is as close to a generic as you can get with a biologic medication.
ks1905
Veteran Member
Joined : Sep 2005
Posts : 6428
Posted 7/12/2017 4:18 PM (GMT 0)
Songlady,
My GI will write doses up to 2 injections
PER WEEK
for maintenance. So you have some room in your dosing if you need it. I had side-effects from Humira so I never pushed it that high, I moved on to Simponi and then Cimzia. Now I am on Stelara.
I'd go remicade/inflectra if you need to move to another medication. It seems to have the best response rates; there are some theories on why it's more successful, but it's hard to prove. Usually it's the first biological tried.
songlady
Veteran Member
Joined : Aug 2009
Posts : 3840
Posted 7/13/2017 12:49 AM (GMT 0)
Keith - Wow! I had no clue the dosing was that flexible!
And thanks, John. Now I've learned what Inflectra is.
I am going to give it a few days before I call the GI, so I can really see what the trend is.
You folks are great! Thanks!
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