Risks of Biologics - is it worth it?

Hi friends, new member here and I thought I'd post this as most all previous posts on the subject of biologic risks were years ago. I am a 48 year old male, DX with UC end of Feb 2018. Mesalamine 1.2g (4) + Uceris 9g was finally giving me some relief when, well, being new to UC, I'd recently started eating frozen blackberries each morning with my morning shake... next thing you know I'm in full never-before-had flare. Had to add Iron and D3 as I started getting deficiency symptoms... long story short, I when to GI doc and he wants to move me to biologics. Meanwhile I started a 10mg Predisone taper (my 1st). So he tells me Humira has the lowest success for my severe pancolitis and that he'd recommend Remicade or Entyvio - currently checking with insurance if covered and did a like 12 vial blood test (pass out ). So Remicade has a black box warning label... all of these have huge risks... is it worth it? yeah, colon wretching and bleeding 20+ times a day sucks, but do I want to open myself up for the hellish risks that these warning labels talk about? We'll probably start with Remicade since insurance wants me to do that or Humira before Entyvio... and what are we talking about here for a BC/BS pharmacy plan guy - $10k a dose or what? Seems risky, but I'm new to UC and goodness gracious can we just get to where I can quit being housebound? Thanks all

I choose surgery after 32 yrs of UC and not wanting to go on Humira or Remi bc they lower immunity plus I don't have spleen from football injury when I was young. All meds have some side effects. Surgery has been good choice

Getting into remission is the goal, whatever it takes. Many people here are able to achieve remission with the fewest side effects with milder mesalamines reinforced by rectal meds taken as needed. These meds actually help prevent colectoral cancer.

But others seem to require much stronger immunosuppressants such as the Humira that you mentioned.

And there is a tiny minority, myself included (see my signature), who can stay in remission by monitoring our diets and avoiding foods that trigger symptoms. For example you need to avoid blackberries.

You can see in my signature that I, too, am somewhat new to this. The Lialda, at the same dosage as you, gave me relief for a few weeks alone, and then stopped working and gave me days long migraines. Uceris (generic version) did crapola for me. Pred worked, but after tapering from 40mg to 30mg, the bleeding came back, and the frequency returned. This was over a 3 1/2 month period.

I had this same conversation with my doctor. In his opinion, it wasn't worth trying a different mesalamine if prednisone at 30mg wasn't working, so we had a long talk about the immunomodulators v. biologics, decided on the biologics, and then had a talk about remicade v. Humira. In *my* opinion, the benefits of getting into remission and regaining as much normalcy as possible is worth the small risks. I've been on Humira for 4 weeks now, with the 30mg prednisone, and within a week, all of the symptoms the prednisone was not dealing with just disappeared. I feel so much better, and will start tapering down the prednisone this week.

Nealzy, do you have any choice of Humira over Remicade? I did not like the idea of going every 4-6 weeks for an infusion because of possible scheduling issues and just the time it takes, so I chose Humira. The injection stings a bit, but I bought some lidocaine, and that seems to do the trick.

Side effects can show up years after taking certain meds. We all have tough decisions to make

"have any of you experimented with a pure vegan diet and punting on this whole processed food world with any positive results? "

regardless of what meds you choose, an organic, unprocessed, vegan diet would be a great addition -

suchatravesty - I believe I do have a choice of Humira vs Remicade to start with. I have to try either before Entyvio is approved, but my doctor says he's not had as effective of results with Humira as he's had with Entyvio and/or Remicade.

Bull101 - fair point - It's just shocking to read the warnings... and effects could be not seen until much later, but I suppose that is the case with all meds...

TroubledTurds - that's what I needed to hear... Now the art is determining when to add more raw veggies as my flare eases on pred... sticking to cooked for now, I'll try to introduce more... (RIP TexMex sigh )

iPoop - THANK YOU for the references and the simple statement "It's preferable to keep your large intestine" - that helps me get this right in my mind regarding an approach. I'm darn near tempted to try and get into one of these FMT studies to see the effects of a fecal transplant on this vs. a biologic, but those are hard to come by.

Does anyone in this forum have any experiences with FMT - I see quite a few success stories from overseas, but alas, for now to get it you have to be a part of a study... I mean, the science seems logical... I got started with this whole thing when I had an ER doc put me on Clindamycin when I had a stye morph into a staph infection running down the side of my face 2 years ago - seems that the issue is a 100% wipe out of our unique flora that probiotics cannot really ever help us to recreate... There is something very unique about each of our natural human gut flora I have to think, but, I'm no scientist. Thoughts on FMT ? Thanks all - this forum is sooo helpful Y'all are great.

IntestinalWasps (great name BTW) - this makes sense - during my first and current flare, I started to notice signs of at least iron deficiency - once I got on supplements, the symptoms went away, but I can see how another day or two of that I'd be in the same situation... quite frankly this week when they did the wow blood test (so many vials) having already had blood loss I checked out for a bit... These posts are really helping me understand that Pred ain't the answer and the risks of staying in flare. I choose Entyvio but unfortunately my pharm plan wants me to do Humira or Remicade first... We'll see what gets approved and if I can even pay for this! Again, I think I'm processing the shock of the next level of treatment - I had no idea how little they (doctors, etc) know about UC... it's still a "let's try this... crap, that didn't work, let's try that..." treatment plan or so it seems. Thank you for sharing!

iPoop - thank you! That gives me an idea. Right now haggling with the insurance co and doctor's office while I transition through week 1 of the pred 10mg step down. So far minor improvement also, thanks to the info in the forum, knowing that hope can be fleeting with this, so I'm moderating my highs and lows for what I see in the stool Great resources. THANK YOU!

Here's an example billing of remicade, from a post of mine a while back. This must've hit a $3,000 deductible at the start of the year with my BCBS policy. Subsequent infusions would not have had that deductible apply (meaning BCBS would have paid the bulk of it).

RemiStart pays for the medication but NOT the cost of the IV infusion or the attending nurse's time. So the reason it was $100 out of pocket at the end was for that non-medication cost.
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Every once in a while somebody asks what does Remicade (infliximab) cost. Below is my Explanation of Benefits from my last Remicade infusion at my GI's office. In the end, it costs me $100, after my insurance (Anthem Blue Cross Blue Shield) and RemiStart (patient assistance program) paid the rest.

I weigh in at 64.4 kgs (142 pounds), my dosage of Remicade is 5mg/ml per kg, and Remicade comes in 100ml vials. So, that is 64.4 X 5 = 322mls of Remicade, they must bill you for complete vials, so that makes it a total of 4 vials of Remicade.

CPT........Description.............................Charges........Units.....Total
J1745....Injection, infliximab, 10mg........$150.00........40........$6,000.00
96413....Chemotherapy Admin,..............$350.00..........1..........$350.00
.............IV Infusion up to 1 hour
96413....Chemotherapy Admin,................$80.00..........2..........$160.00
.............IV Addtl hour 1 to 8
J7050.....Infusion, saline solution, 250cc.....$5.00...........2..........$10.00
......................................................................................................
.............Disallowed adjustment BCBS...................................$-3,328.00

............Total Billed............................................................. $3,191.00

............BCBS Paid............................................................... $-480.00

............RemiStart paid....................................................... $-2611.00

............Patient Responsibility.................................................. $100.00

Man, do I wish I could just pencil away half of a bill like BCBS does with it's "Disallowed" line lol.

Yes, 178lbs = 80.7 kilograms. 80.7 x 5 = 403.5mls, they must bill you for complete vials, so that makes it a total of 5 vials of Remicade.

It's a common misconception that immunosuppresion means bubble-boy and a fear of being sick. The reality is I've been no more sick than usual, since starting remicade and 6MP (both are immunosuppressing meds). I have 1-cold a year, and I have not had the flu since starting remicade in 2012. When I am sick, however, I have an extra day or two of that cold and those are days with the more extreme symptoms of that cold. We have posters who are teachers and healthcare workers, and interact with those who are most likely to be sick and take the same biologic immunosupressing meds. Yet they report the same thing, not sick any more than before taking these meds (or at most 1-more time than their normal). You don't have to be a germaphobe by any means.

On immunosupressing meds, we still have a functioning immune system. That immune system is just taken down a few pegs in efficiency and effectiveness. So that translates to a cold hitting harder, faster, being a bit worse, and lasting an extra day or two. The bigger concern is infections requiring antibiotics, like an UTI, sinus-infection, or a bronchitis and the same applies, it hits faster, and harder, and your best to seek out antibiotics ASAP, rather than wait it out. Regular cuts and bruises are of no concern, we heal just fine.

How fast will the meds work and fully heal you are the million dollar question in the gameshow. It varies by each person, and how much damage your flare has already done to you. Internal healing does take time. These meds do not directly heal you, what they do is stop the immune system's attack so your body can heal itself. Most people see a positive improvement within the first 6-weeks of starting the med. I often find the first 80% of your recovery comes very fast while the last 20% takes a whole heck of a lot longer, and is a lot more gradual. A full recovery can several additional months after the initial response.

Totally agree. I am a single income family and I have 2 in college. My wife skipped on Humira for her psoriatic arthritis when we had CVS Caremark for prescription plan. Looks like with BC/BS we can at least get these biologics, but they will be way expensive. - Sincerely currently buzzing on day 3 of my first Pred 10 mg step down wooo wow...