Do I REALLY need Humira for life?

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)

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.

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.

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.

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.

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.

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.

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.

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.

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.