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Ulcerative Colitis
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Posted 2/7/2023 11:19 PM (GMT 0)
I was diagnosed with a severe case of UC at Dallas VAMC.......Gastrologist put me on 4 MESALINE tablets a day for about 6 months and they did another colonoscopy and that diagnose revealed that I had actually worsen so they decide to put me on HUMIRA pen injections in the stomach, which I began last month. I have injected two doses already 14 days apart. I am hoping this solves my issues as I am already a prostate cancer survivor so additional inflammation going on can not be a good thing. My questions are (1) has anyone taking HURIMA been able to get UC under control, and (2) is this truly a life-long treatment situation requiring injections every 2 weeks. Thank you in advance for any replies.
Posted 2/7/2023 11:52 PM (GMT 0)
1) There are some with UC who have had success with Humira, but it seems to be more successful for Crohn's than UC
2) UC is life long and will require some form of ongoing treatment for life

Do you know what the dosage is of the pens you are using? When you first start you should have higher dosages the first few injections:
Day 1: 160 mg (single dose or
split over two consecutive days)
Day 8: 80 mg
Day 15: 80 mg
Then after that it should be
80 mg every other week
or
40 mg every week

Those higher loading doses in the first couple weeks are important to give Humira a kick start. If you did not do loading doses like described above, please ask your doc about that as soon as possible.

If you don't see significant improvement in your symptoms within 3 months it's doubtful this is the med for you and you should work with your doc to try a new med. Unfortunately, for many of us it's trial and error until we find the medication that gets us to remission. UC is a very individual disease in that what works for one person may not work for others.

My best advice is to read all you can about UC and the various treatments so you can partner with your doctor to arrive at what works best for you. With this disease it truly does require a good doctor/patient partnership. Don't be afraid to ask questions and advocate for yourself. Remember: you have only one patient to treat (yourself). Your doc likely has hundreds so his attention is going to be split in many directions.

There is a lot of good info on this forum. I know I learned a LOT about UC here. My docs never really explained much and there were some meds (rectal meds) I would never have known about if not for Healing Well. I had to ask my doc to prescribe them. Generally, we hear about new treatments here before our doctors even know about them.

(Congrats on surviving prostate cancer!)
Posted 2/8/2023 4:35 AM (GMT 0)
Welcome to the forum Wayne TX. You have landed at a good place to ask questions. I have crohns & joined HW back in 03. I learned more about crohns here at HW than any dr could have told me. In fact my gi suggested I find a good online support forum. Careful where you read or what you read, lots of bad information out there.

Humira is one of the older drugs, originally approved for crohns, but later approved for UC like so many other drugs. Hopefully once you get to the therapeutic range you will start seeing improvement. I would expect some improvement at 3 months, but certainly not remission by then. When my gi starts his patients on a new medication he has a 6 month rule unless there is zero improvement or the patient becomes worse. You will find each dr has their own protocol. The good news is if for some reason Humira doesn't work out there are many other medications to try.

As CC mentioned, UC is life long & you will need to be on treatment the rest of your life. Newbies sometimes decide to stop their medication once they start feeling better, that's denial kicking in. Don't let yourself go down that rabbit hole because it's tough making another comeback. Get in remission & live your life.

Take care.
Posted 2/11/2023 3:35 PM (GMT 0)
I did well for several years on Humira. I had to increase the dose to weekly injections, but overall it was a good med for me. I stopped in 2022 because of side effects and have now switched to Entyvio.
I hope Humira works for you!
Posted 2/11/2023 4:19 PM (GMT 0)
I was on Humira for 4 years and it worked great. Then I got pneumonia and I came off it per the ER doctors instructions. After I got over the pneumonia I was still in remission with my IBD. I asked my (then) GI if I could just stay off it, and that maybe I was in complete remission and didn’t need to be on any drug any more. He said, ok, I don’t recommend it, but let’s give it a go.

about 8 months later I started to flare. He put me back on it. It didn’t work. I had built up antibodies to it.
He said, oh yeah, that can happen if you stay off it a long time.

I was not happy! Had he told me this when I first asked about staying off it I might have went right back on it.
Knowing how well it worked for me, and knowing that IBD is a chronic life long illness.

Anyway. Moral of the story and why I am posting in this thread….

If you go on it and it works…stay on it
Posted 3/30/2023 2:43 AM (GMT 0)
Thanks for all the advice.....I am still taking Humira and being seen every other month with a third colon screening scheduled for September.
Posted 3/30/2023 10:48 AM (GMT 0)
How are your symptoms now? Any improvement?
Posted 3/30/2023 3:42 PM (GMT 0)
Are you feeling any better? If the Humira doesn't work, there are quite a few other medications you can try.
Posted 3/30/2023 8:24 PM (GMT 0)
Humira worked very well for my UC! I started taking it in January of 2021, and it took 3 months to truly start working. But once it started working, I was symptom-free for two years. I recently experimented with stopping the Humira, and I quickly fell back into a flare. I have since restarted the Humira, and the flare is slowly but surely ending.

Just a note: Humira alone never lowered my fecal calprotectin levels, even though the Humira completely stopped my flare symptoms. I also take CBD oil which last year demonstrably lowered by fecal calprotectin to normal levels!
Posted 4/5/2023 10:12 PM (GMT 0)
No....not doing any better....in fact I am worse now but I can't blame it on HUMIRA as not working as it seemed to be working good before I went to Australia for a month. I totally messed up my injection while in Australia so that threw everything off track again......right back to constant trips to the bathroom with the runs. I am now back home so back on schedule......took another injection two weeks ago but no changes noted as yet.......I am hoping additional injections every 2 weeks will improve my situation.....time will tell. Neither of us thinking the wife cooked up blacken salmon yesterday and that did not help the situation either. I have had to resort back to pins for the past 2 weeks because urges occur sometimes so fast I can't even make it to the pot on time. 40mg/0.8ml dosages. Any suggestions other than staying the course of every two weeks on HUMIRA????

Post Edited (WayneTX) : 4/5/2023 8:44:48 PM (GMT-8)

Posted 4/6/2023 1:55 AM (GMT 0)
Wayne, contact your dr's office & ask for a stool testing kit. Since you were out of the country you need to make sure you didn't pick up a parasite or other pathogen.

Keep us posted.
Posted 4/6/2023 3:26 AM (GMT 0)
Thanks straydog,,,,,,did that already before going to Australia.......but I will request another stool test from my PCP in Gastro since not improving yet. Had to make at least 15 trips to the toilet today. It is limiting my ability to go to places outside home.

Post Edited (WayneTX) : 4/6/2023 4:50:44 AM (GMT-8)

Posted 4/6/2023 5:42 PM (GMT 0)
Hi Wayne ... I think the stool testing that Susie was referring to is one to check for pathogens that you could have picked up when you were traveling.

Contact your GI and let him know what's going on with you. You may have developed antibodies to Humira if you missed doses for a month. There is a blood test that can check for that.
Posted 4/6/2023 9:18 PM (GMT 0)
I only missed one dose (an accident) in a every 14-day cycle, but I'm paying the price now. 15-20x a day to the toilet. HUIMIRA had been working for me before that. Never thought about antibodies. Thanks for the tip about getting a blood test done to check for it. Will ask for sure. Thanks.
Posted 4/8/2023 12:45 AM (GMT 0)
You can ask for steroids--prednisone or budesonide if you're really suffering. And yes, they will want to do bloodwork and stool tests, most likely. Sorry you aren't feeling well. Humira may just not work for you. It's not effective for a lot of people. It did nothing for me other than cause side effects. I'm unclear if it ever worked for you and stopped working or how long you've been on it.
Posted 4/8/2023 6:32 PM (GMT 0)
So sorry you are so sick, Wayne! I am in the same boat as you now. Got all of my bloodwork back from my Biologic Simponi and I have no antibodies and my levels were normal. It just stopped working in February! So Humira might have worked and then stopped for no reason. It sucks when that happens. I started on Entocort to help get my flare under control but no results yet. Sucks not leaving my house at all and being a prisoner to diapers.
Posted 4/8/2023 8:08 PM (GMT 0)
I can totally relate.....I am staying home because I still get quick urges to go the toilet. I am hoping my next HUMIRA shot on the 12th will help my situation more but so far no relief from runs. Yes...it sucks being afraid to go out anymore than absolutely necessary out of fear of not making it to a toilet in time. I have to wear pens because it hits that fast at times. Hoping my next shot kicks in!
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