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Do I REALLY need Humira for life?

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Ulcerative Colitis
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UCNick
New Member
Joined : May 2021
Posts : 15
Posted 5/13/2021 8:47 PM (GMT -6)
I was diagnosed with moderate pan colitis in Feb. 2020. Started with mesalamine and prednisone. Had first flareup after tapering off prednisone. 10/2020 colonoscopy showed much less inflammation except near “exit”. Dr. forgot they prescribed 8 weeks of budesonide to help with 6-week flare-up.
Dr. insists I need Humira (or Stellara) for life. I started Humira 12/1/2020. Just moving to Medicare so I have to apply every year to Abbvie for free Humira but have to keep income below 77k a year.
After playing “game” of keeping income much lower since Obamacare started, I was hoping to reduce my exposure to some stocks and take some gains. I have severe anxiety, and the cost/future with Humira makes it almost too much to handle.
I don’t even think it works that well. I just had my second 6-week flareup (first on Humira). I still take mesalamine, turmeric and Activia yogurt.
My main question is whether you all think I need to take Humira forever or whether I could do ok with mesalamine or one of those two early pre-mesalamine drugs…something like disodium something or sulfasalazine.
To expand on same question, is purpose of Humira to prevent loss of colon or just to keep UC in remission? I’m considering a second opinion if my GI doctor doesn’t spend more time with me and provide a clear answer. I think he is a good doctor but I also know biologics mean $$ to everyone but the patient. My flareups have been annoying but tolerable since I’m retired and can usually spend at least the mornings at home.
Thanks in advance for any and all advice/opinions. Not willing to just change diet and take natural supplements only, though.

Post Edited (UCNick) : 5/13/2021 9:06:24 PM (GMT-6)

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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2148
Posted 5/14/2021 4:41 AM (GMT -6)
What are your current symptoms? If you are still having high frequency, diarrhea pr blood, I would say that Humira isn't working for you and you need a different biologic. Humira only worked marginally for me, but I have had enormous improvement on Remicade. All biologics are expensive though.

Each person has a different UC journey. But generally if mesalaimine doesn't work well enough for you and you go on biologics, it's unlikely that you can go back to just mesalamine and stay well.

UC is for life. There is no cure. All any of us can do is to find a treatment that allows us to live our lives. For some people strict dietary changes work. Some do fine on mesalamine. Others need biologics. And for some nothing works and they need to have surgery to remove the colon.

At least you are fiscally fortunate if you need to "try" to keep your income below $77k. My heart really breaks when people come to this forum who are living in poverty and are unable to afford proper medical care/treatments or those who have high deductibles and co pays. With this disease you need good insurance, or lots of money. Definitely not a "cheap" disease.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2148
Posted 5/14/2021 4:44 AM (GMT -6)
P.S. ... the purpose of any UC drug is to get and keep UC in remission which in turn could prevent loss of your colon.
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3655
Posted 5/14/2021 5:59 AM (GMT -6)
I think he is a good doctor but I also know biologics mean $$ to everyone but the patient

If you are really concerned about this then you can use this website to look up any payments your doctor is receiving from Big Pharma.
Also there there many here who find that taking rectal mesalamine enemas are very effective when taken along with oral mesalamines.

https://projects.propublica.org/docdollars/
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1544
Posted 5/14/2021 6:17 AM (GMT -6)

Somebody said...
To expand on same question, is purpose of Humira to prevent loss of colon or just to keep UC in remission? 

It's both. Untreated inflammation over time increases the risk of colorectal cancer which might ultimately lead to colectomy. Similarly, uncontrolled inflammation can lead to toxic megacolon which is a life-threatening emergency requiring emergency surgery to remove the colon before it ruptures and you die from septicaemia. And then there is the in-between scenario where you don't have cancer or toxic megacolon, but the symptoms from the inflammation make your quality of life intolerable and then you opt for colectomy to relieve the symptoms.

There is definitely a psychological adjustment to the idea of being on strong medications for life. I doubt anyone stays on one biologic forever because they usually stop working at some point and/or better/newer treatments are coming on to the market all the time.

There is also definitely an exploitation by the pharmaceuticals industry in terms of the amount they charge for biologics, although they are more expensive and complicated to manufacture than "non biologic" drugs, and the developers of new drugs typically takes decades of investment and millions of $$$. But if you wanted to overhaul the pharmaceutical industry then you'd need to start a career in politics, or your own drugs manufacturing business.

If you're not confident about your GI's assessment or you feel he isn't giving you enough time/information then by all means shop around for a better one or go for a second opinion. I am on my 6th GI and I love him but it took a while to find him.
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UCNick
New Member
Joined : May 2021
Posts : 15
Posted 5/14/2021 8:29 AM (GMT -6)
Thanks everyone. It’s so hard to research online but I feel much better knowing biologics are not just to control remission but to help with the long-term health of the colon. No blood and very minimal diarrhea.
I don’t make up to 77k a year but I count my blessings that I have savings. My brokerage account is heavy on high tech and I want to slowly reduce exposure.
Thanks for the pro publica link. I’ve decided to stick with Humira for now.
I really appreciate the input and every morning when I count my blessings I am mindful of the suffering all over the world and I am thankful for a roof over my head and the means to obtain food and medical care.
My wife left me 14 years ago and I never had a chance to have a family, so I do worry about long-term care as I hit 65 in July. Thanks again. 🙂
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2148
Posted 5/14/2021 12:33 PM (GMT -6)
I live alone and have similar worries, Nick. One of many reasons why I will exhaust all treatments in order to avoid surgery. After surgery care would present problems as I don't think you go from surgery to climbing steps, doing laundry, grocery shopping etc, overnight. I would imagine that even getting in and out of bed on your own takes a little time to be able to do.

When was the last time you had a colonoscopy? You might want to have one to see if Humira is working. You have been on it long enough that you should be at or close to remission (meaning like you were pre-UC). Also, you might want to add rectal meds as they can really help with left sided inflammation.

Also, you might want to check into the costs for Humira for when you are on Medicare. Definitely have a good Medicare supplement plan to help pick up any costs Medicare doesn't cover. I believe most infusion meds (like Remicade & Entyvio) are covered under the major medical portion of Medicare. Not sure about Humira since that is self injections.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1373
Posted 5/14/2021 4:19 PM (GMT -6)
Cc is correct. Medicare covers infusions at 80% because it’s administered by a hospital/doctor. Be sure to spend the extra money on a good supplement (I have the F+ plan which unfortunately is no longer available) that will pick up the rest or most of the cost of any infusions. Remicade and entyvio are more expensive meds but also fully covered with Medicare and a *good* supplement. I pay $0 for my entyvio infusions.
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VanJordan
Regular Member
Joined : Dec 2019
Posts : 428
Posted 5/15/2021 3:28 AM (GMT -6)
I don't understand why people bring up the risk of toxic megacolon. Do you know how rare it is to get that? You usually have to have a fulminant flare that is 10/10 for that to happen. I've been atttending IBD support groups for 10 years and never met anyone who has had it or knows anyone who has.

Colon cancer risk... also overstated. Please read this meta-study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725331/

It looks scary when you see that the percentage goes up after 10 years, but the hard numbers of UC patients actually getting colorectal cancer after 10 years are very low. We're talking 0.16% out of almost 20,000 people in Denmark, which has the highest CRC rate in the world.

As long as you get routine colonoscopies you're highly unlikely to ever get CRC. The main focus of meds is to regain quality of life so your body can heal and you can be happy. It also prevents permanent changes to your bowel structure, affecting BM time and absorption. I've had several GI doctors use the CRC scare tactics to push me down treatment paths that I didn't want, and I am so annoyed by it. If you were just diagnosed in 2020 then your chances of CRC anytime soon are so low as to be almost non-existent.

If a biologic works well then there's no reason to stop it, even for life, if you can afford it. Most GI doctors would not keep you on it for life if you eventually achieve remission for 5+ years. They would consider stopping the drug and see what happens. If you aren't getting there with Humira, then you may need to try adding other meds, or switch biologics completely.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1544
Posted 5/15/2021 3:35 AM (GMT -6)
Toxic megacolon is rare these days because most people try to keep their inflammation under control 🙄
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VanJordan
Regular Member
Joined : Dec 2019
Posts : 428
Posted 5/15/2021 3:37 AM (GMT -6)

poopydoop said...
Toxic megacolon is rare these days because most people try to keep their inflammation under control 🙄

It's rare because medical intervention is better. You don't get toxic megacolon from run of the mill flares, only fulminant ones. Please google what a fulminant flare is before you scare people with notions of toxic megacolon.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1544
Posted 5/15/2021 3:39 AM (GMT -6)

VanJordan said...

poopydoop said...
Toxic megacolon is rare these days because most people try to keep their inflammation under control 🙄

It's rare because medical intervention is better. You don't get toxic megacolon from run of the mill flares, only fulminant ones. Please google what a fulminant flare is before you scare people with notions of toxic megacolon.

How is that different from what I wrote?
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1544
Posted 5/15/2021 3:42 AM (GMT -6)
Van Jordan you are the first to whine and throw a tantrum when others are rude to you but have no problem dishing it out to others.
Mods I don't care if you ban me for this post I am done here.
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VanJordan
Regular Member
Joined : Dec 2019
Posts : 428
Posted 5/15/2021 6:53 AM (GMT -6)
I'm sorry I wasn't trying to be rude, that's why I posted a scientific article. Just because you got corrected doesn't mean someone is being mean to you. It's important that people be informed and that rumors don't get passed along that might not be accurate. If I were the OP, I'd want to be informed. I'm just looking out.

It would be a shame if you left the forum over this.
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 470
Posted 5/15/2021 7:20 AM (GMT -6)
I thought you were both saying the same thing with different words - that treatment is better nowadays which makes toxic megacolon rare.

I think we're at greatest risk pre-diagnosis when we're not on any medication. A family member of mine (the first to be diagnosed with UC) ignored all symptoms till they were diagnosed while having their bowel removed in a medical emergency. Ignoring the symptoms for a long period of time can be pretty dangerous.
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 470
Posted 5/15/2021 7:25 AM (GMT -6)
Back on topic, OP, I'd have stayed on Humira for life if it had worked in the long term but after 2 years of it working the effectiveness gradually decreased over the next 4 years, to the point that it wasn't effective.

I really feel for those patients in the US that have to make decisions on treatment based on whether or not they have the insurance to cover it.

In the UK we sometimes have to jump through hoops on fire to get prescribed expensive medication, as the NHS hospital has to apply for funding, but at least once funding is in place we don't have to pay for our expensive meds, and can get prescription prepayment certificates that cost £108 for a year, to cover the cost of the cheaper meds. I'm extremely grateful for the NHS.
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UCyousee
Regular Member
Joined : Feb 2014
Posts : 470
Posted 5/15/2021 7:38 AM (GMT -6)
UCNick, after 17 years of UC I now try not to look too far into the future. In 2014 when I was put on cyclosporine my gastro was pretty sure I'd have my bowel removed within 2 years. Jak inhibitors weren't even an option back then. Now I've just started Xeljanz and I'm hopeful it could give me a few years of remission.

Are you able to choose a biosimilar version of adalimumab that's cheaper than Humira? Mostly patients in the UK are on cheaper biosimilars now that the patent for Humira has expired.
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UCNick
New Member
Joined : May 2021
Posts : 15
Posted 6/2/2021 10:23 AM (GMT -6)
Thanks all. The Humira appears to be working so far. I was approved by Abbvie for free Humira. They were anxious for me to switch from my $5 co-pay card to them, even before starting Medicare Advantage July 1, 2021.
I finally figured out Abbvie’s angle. I knew they couldn’t just be giving it away out of the kindness!
I found out they have their own specialty pharmacy so they get to bill my insurance until July 1 and then bill Medicare.
I wish mesalamine was cheaper. I’m going to ask dr. about sulfasalazine instead but I think I know his response.
I really appreciate the advice. Wishing better health to all.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1373
Posted 6/2/2021 10:58 AM (GMT -6)
FYI— some mesalamine manufacturers will give you freebies too. I was getting Apriso from the manufacturer for free. Of course that was also before there were generic options so I don’t know how that figures in.

Medicare has different rules that don’t allow that angle (billing them) or the $5 copay cards. So most (maybe only some) manufacturers also have a completely free program. I think they’re required to — it’s income based but fairly easy to qualify.
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