Colonoscopy shows inflammation but I feel symptom-free. Should I go on Humira?

My regular GI, we'll call him A, has been treating me for my UC for the last ~15 years. I've been in what feels like remission for the last 5+ years. And by that I mean I have no visible blood in my stool, no abdominal pain, pretty well formed stools (though they are smaller than before my diagnosis), and I have a BM once or maybe twice a day at most. So I've been very happy with how things are going for the last 5+ years. I've been taking two Lialda daily (2400mg total mesalamine) and 100mg of azathioprine daily. The only drawback is that I get maybe one infection a year (shingles, staph, sinus infections, flus) that I have trouble getting over, which may be due to the azathioprine compromising my immune system.

I just had a colonoscopy performed by a different GI, we'll call him B.

I received a letter from A saying that the colonoscopy found active chronic inflammation on one side. And that this typically would indicate my medicine is not working adequately and I would go on Humira to achieve complete remission. And A advised me to get a second opinion about this.

I'm going to meet with A and B to discuss my options going forward. But does it make sense for me to go on Humira when I feel great without it? I'm particularly reluctant to do so because 1) I am afraid I'll be more susceptible to infections than I already am under azathioprine, and 2) it's $70,000 per year. I know I'd pay less than this after insurance but it's an enormous amount nonetheless.

If your inflammation is on the left side, you should just add a nightly mesalamine enema. You could also take more oral mesalamine.
Too bad vedo (entyvio) isn't used more. The fact that it is a gut specific immune suppressant is a way bigger deal than it gets credit for. With the way they have been jacking the price of Humira, I think vedo is even cheaper, and seems to get about 10% more people into remission according to the studies.
Adding another level of non-targeted immune suppression will obviously make you more vulnerable to opportunistic infections. I am now fighting a fungal infection (Valley Fever) which is likely the result of taking prednisone, or at least made much worse because of it. Now I have to take a high dose anti-fungal for at least 3 months.

I would not go on it if I had no symptoms. However, Humira has a copay assistance program, so you'd only be paying $5 per injection (typically done every two weeks).

" However, Humira has a copay assistance program, so you'd only be paying $5 per injection (typically done every two weeks)."
My sister told me this as well. Just out of curiosity how does this work if you have a HSA plan with a $3000 deductilble and $7000 out of pocket maximum? Ordinarily this means I'd be paying $7000 out of pocket for Humira. They wouldn't reimburse me $6870 per year, would they? Because that's what it would take to bring my costs down to $5 per two week injection.

UCinGV said...
" However, Humira has a copay assistance program, so you'd only be paying $5 per injection (typically done every two weeks)."
My sister told me this as well. Just out of curiosity how does this work if you have a HSA plan with a $3000 deductible and $7000 out of pocket maximum? Ordinarily this means I'd be paying $7000 out of pocket for Humira. They wouldn't reimburse me $6870 per year, would they? Because that's what it would take to bring my costs down to $5 per two week injection.

Yes. You are right. They generally have a monthly cap as well as the $5 min. So if the cap is $500, they pay $495. If the copay is full price because you are in the deductible window, then you still pay a lot out of pocket.

Good news is that the full non-insure amount applies to the deductible. So any assistance helps you meet the deductible.

Usually when selecting a HSA plan, the assumption is that you are going to meet the deductible. So not only will the remaining months of your Humira bee fully paid, but also all other medications for remaining months.

Good luck

Inflammation is no joke. According to my doctors it’s what led to my series of pre-cancer polyps (found early thank goodness). I’d give recitals a serious try first if you have no symptoms— at least you’ll be able to know that you gave it your all before having to step up to biologics.

FYI — my entyvio infusions are charged out at $16k every 8 weeks. Insurance only allows payment of $5-6 k though and disallows the rest. So the actual cost is about 36k / year

John -- what you said may apply to HSAs (I don't know much about them), but it doesn't apply to FSAs. I have an FSA that is all my money to pay for whatever insurance and co-pay assistance programs don't pay.

I suspect that if the HSA is all your own money (no employer contribution) you would be ok to use it along with the co-pay assistance program from the drug companies.

The drug companies just don't want you to get money from them if you are getting money from somewhere else too.

My bad, HSA only. I have neither at the moment and should've googled before posting ...doh

IamCurious said...
Besides getting a 2nd opinion I would check out the website below to see if your doctors are receiving payments from the maker of meds.

a moderator said...
I have removed the hot link from your post. At the top right of the site is "Donate", sites like this are not allowed at HW. See rule number 4.

Anyone reading this link can see that it is NOT intended for promotional purposes. This is a very relevant web site for anyone who wishes to seek advice from a physician.

It's bad enough that most of the HealingWell moderators give the appearance of being shills for Big Pharma. And now we aren't even allowed to be aware that there is available a website that empowers us to see for ourselves if our doctor is receiving payments and kickbacks from the manufacturers of the drugs they are prescribing.

No wonder members are losing interest in participating in these forums. This makes a mockery of HW's mission as stated on its home page:

”Chronic Illness Support
Find the support you need and connect with others in our moderated HealingWell support groups. Share your symptoms, learn about others' experiences, and get quick answers to your health questions. Join our free chronic illness community today!”

I think that's a bit uncalled for IAC, I understand you're upset a moderator (not me) edited your post and removed a link. This is a moderated forum, as you know. None of us are shills for bigpharma, I am not on their payroll lol. The only payment I get for moderating is the rare thanks from poster (we do not get money, not even HW mugs/merchandise for our extra responsibilities).
If the link was the problem, then just mention the site name: Google search for "Dollars for Docs - ProPublica" and you will find the website and can look up the information yourself. Yeesh.

The link is still within our Resources sticky thread too, so it is no secret.