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Humira, Remicade, or Simponi? Which would you try first?

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Ulcerative Colitis
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Posted 2/24/2015 11:58 PM (GMT 0)
It seems to be clear now that I'm stepping up to a biologic very soon. After researching on my insurance website they have these three listed as "Preferred" biologics; Humira, Remicade, and Simponi.

Entyvio is available to try only after trying one of the other three first.

So, if you had the choice, and the cost of each was the same (in my case it is), which of these three might you choose to try first and why?

Humira
Remicade
Simponi
Posted 2/25/2015 12:01 AM (GMT 0)
Remicade has the best stats, but it is a 2-3 hour infusion. The other two are injections done every 2 or 4 weeks. Thats really all there is to it. Id go with Remicade first if it were me
Posted 2/25/2015 12:41 AM (GMT 0)
I would try Humira if my quality of life was not too poor. Less chance of forming antibodies or needing to be on an immune suppressant to keep it working.

But remicade is a little better on average, and has a longer base of experience
Posted 2/25/2015 12:41 AM (GMT 0)
Ditto. If a three hour long infusion can be fit into your schedule once every 6-8 weeks then that has the best odds of success.
Posted 2/25/2015 1:44 AM (GMT 0)
My guess is your insurance is going to dictate which one is the preferred first line biologic. Here is my experience: I started remicade before insurance decided they knew which biologic was best for us. My GI at the time said that patients who respond well to prednisone statistically respond well to remicade. He didn't offer any other choice so remicade it was.

Last summer my GI doc suggested that I switch to an injectable biologic because I was having issues with IV access. I researched it and chose simponi but my insurance said no and I had to accept humira. I ended up having a significant side effect requiring a medical leave and returned to remicade after 3 months. Clearly, I am partial to remicade. The only side effect I had was a headache during the loading doses and I had immediate results. My UC cramps went away during the 1st or 2nd infusion and then I progressively got better. To have a life without cramps was a dream.

This post is not meant to scare you away from humira. It's to let you know that insurance may trump you and your doctor's choice.
Posted 2/25/2015 2:13 AM (GMT 0)
My doctor gave me a choice between remicade and humira when it came to it and the deciding factor for me to choose remicade was that it was a painless IV (yes it takes 2-3 hours) every 8 weeks as opposed to giving myself a shot every other week or so. The thought of giving myself a shot kinda terrified me so I chose remicade. And I have had great success with it. No side effects whatsoever. Only one minor flare since and I credit that to holidays and starting up school again. I'm not on anything else besides the remicade. Tried imuran when I had my little flare, but the side effects for that were brutal for me so I went off it.

It was also kinda my understanding that if remicade ever failed for me, I could have success with humira afterwards, but the other way around the odds weren't as great. That could be completely wrong, but either way remicade sounded right for me.

It's really a matter of preference. If you aren't as terrified as I was about giving yourself a shot then humira might be better for you. If you have time in your schedule for a 3 hour appointment every 8 weeks then maybe you would like remicade. I find my infusions very relaxing. It's just time I have to myself. My infusion center is super nice. A big room with about 12 comfortable recliners circling a nurse's station in the middle. There are 2 private rooms for people who prefer that. My place has a TV hooked to the ceiling for each chair with about 50 channels and if you don't like anything that's on they have about 30 on demand movies that change every time I'm there with more recent releases. They have snacks and drinks and warm blankets and pillows too. I love it. If you have a job that doesn't allow you to miss 3 hours of work every 8 weeks or if you travel for work or if you're going to school in a different city or state, humira might be better for you.
Posted 2/25/2015 11:18 AM (GMT 0)

mcfarl73 said...
It's really a matter of preference. If you aren't as terrified as I was about giving yourself a shot then humira might be better for you. If you have time in your schedule for a 3 hour appointment every 8 weeks then maybe you would like remicade. I find my infusions very relaxing. It's just time I have to myself. My infusion center is super nice. A big room with about 12 comfortable recliners circling a nurse's station in the middle. There are 2 private rooms for people who prefer that. My place has a TV hooked to the ceiling for each chair with about 50 channels and if you don't like anything that's on they have about 30 on demand movies that change every time I'm there with more recent releases. They have snacks and drinks and warm blankets and pillows too. I love it. If you have a job that doesn't allow you to miss 3 hours of work every 8 weeks or if you travel for work or if you're going to school in a different city or state, humira might be better for you.

mcfarl73, it sounds like my GI and the partners in his practice have their own endoscopy/infusion center with a similar set up in one of the main hospitals around here. My wife and I are debating whether an infusion procedure like this would constitute an admission to the hospital for an outpatient procedure where they wristband you, etc.

Since Remicade is different in that it requires such services we're trying to approximate the additional expense of such an infusion service above and beyond the cost of the remicade itself. I know everyone's insurance expenses will vary but what is the additional cost in your experience?
Posted 2/25/2015 11:32 AM (GMT 0)
I spoke to my wife about these three options last night and we have some questions for you folks about the remicade infusions.

She explained that it would be difficult for her to find the time with her work to take a day off every few months to go with me to an infusion. I explained that I didn't think she would be required to go as all I've read about any ill effects post-infusion included maybe some tiredness but otherwise it's not that big a deal.

So, here are my questions:
1) Can I take myself to these infusions without worry of veering off the road into a ditch on the way home (from ill effects of the infusion....not my poor driving)?

2) It sounds like people really start to notice when it's time for their infusion. If our schedule is such that we'll be out of town the week the infusion should be done could I do it a week early? Would that throw off the following infusion having to go 9 weeks instead of 8? Could doing it a week late cause a major setback with a flare?

3) My wife's question: What side effects am I likely to experience from the infusion in the week following?
Posted 2/25/2015 11:44 AM (GMT 0)
1.) I always go solo to my remicade infusions. I am never drowsy and always fine to drive. They often offer an antihistamine as a premedication, I get claritin. Some infusion centers offer benadryl, which can make you sleepy.

2.) I never notice a difference, as my next infusion approaches. The infusion doesn't have to always be 8 weeks to the day, it can be done a little earlier ir a little later (usually by a few days is fine).

3.) I've never had any side effects after my infusion. Some report being tired (likely due to benadryl). Remicade is not prednisone; few experience side effects.
Posted 2/25/2015 12:03 PM (GMT 0)
I get my infusion in my gastroenterologist practice and it is not considered to be hospital outpatient. I pay a drs office copay. Check with your insurance if there is any question.
Posted 2/25/2015 1:58 PM (GMT 0)
Thanks, iPoop and everyone else!

Great info! :)
Posted 2/25/2015 2:10 PM (GMT 0)

platinumpixie said...
My guess is your insurance is going to dictate which one is the preferred first line biologic.

Thanks, platinumpixie. I reviewed the prerequisites for each of the three online and it seems clear to me that they deem any of the three as equals. Of course, there is no guarantee once it gets to a pre-auth/claims stage that some pointy head at the insurance company won't steer me to what will cost them the least. I'm trying not to buy into any one of them too much. Seems they all have their advantages and disadvantages.

I'm surprised that they would list Simponi among the preferred first treatments since it's so new. The optimist in me says they must be seeing positive numbers on the bottom line with this treatment, meaning that it seems to be working for people and is approximately the same cost as the others even though it's relatively new.
Posted 2/25/2015 2:19 PM (GMT 0)

mcfarl73 said...
If you aren't as terrified as I was about giving yourself a shot then humira might be better for you.

Thanks, mcfarl73. The shots don't scare me too much. A few years ago I was admitted to the hospital for some other issues. I was way overweight and my A1C was high so the doctor sent me home with a Novalog pen. Giving myself the shots then didn't bother me. The needle was so tiny I didn't even feel it. I find it much more jaw clenching to check my blood sugar every day with those little spring loaded lancet launchers. I think doing it with an actual syringe if I had to might give me the heebie jeebies at first but I guess we learn to do whatever we need to do, right?

It sounds like the Humira shots sting like a mother, though. People with self-proclaimed high pain thresholds talk about being in tears by the the fourth inital loading shot. That doesn't really appeal to me, I must admit. It sounds like Simponi doesn't hurt too bad at all.
Posted 2/25/2015 3:37 PM (GMT 0)
1) I have always gone to infusions by myself and I've never felt tired after.

2) I don't notice when it's time for my next infusion other than seeing it on the calendar. I don't think insurance would cover a week early but a week later shouldn't give you too many problems. I did a week later once and I was fine.

3) I have had absolutely no side effects. Some people say they get a headache, I haven't even had that.

My infusion center is in like an outpatient center with different offices. When I get my infusions I'm with chemo patients, people getting blood transfusions, etc. It's not a hospital for mine, just a separate center behind the hospital. Not admitted to the hospital itself but I do get a wristband so they know you're legit. My infusions cost me nothing. I'm very fortunate to have excellent insurance though. A lot of people have said it's the best in Michigan.
Posted 2/25/2015 5:58 PM (GMT 0)
I called my GI's office today to see how they code/bill their infusion process. They do it as an outpatient procedure and enter it into their computer similar to that of a colonoscopy.

More interestingly/importantly I found out from one of the nurses some handy information about what progression of drugs my GI prefers. Depending on the severity of the situation he starts most of his patients on a self-injectible (preferably Humira) then, if that fails, he moves onto Remicade as a last-line. Interesting approach as it seems to be different than what I've read about here but at this point I will trust his judgment and skills in dealing with his many patients. I still wonder why he never really mentioned Humira before, always Remicade. Maybe he did mention it and I just didn't hear.

So, now to bone up on Humira and mentally prepare for this new treatment path. PPD test and chest xray this week and I should be ready to go.

Thanks to everyone again for all your info and insights. I certainly found it all very helpful and I'm sure other folks did, too. :)
Posted 2/25/2015 6:19 PM (GMT 0)
I think many GI's prefer the injectibles over the infusions, not based on success rates, but on patient convenience. Remicade clearly has better success rates than all, except for the fact that you can develop antibodies to it more easily than the others.
Posted 2/25/2015 8:37 PM (GMT 0)
Humira for the convenience factor (though I have bad memories of that drug *shudders*)

Wishing you the best.
Posted 2/25/2015 9:09 PM (GMT 0)
Humira is easier (and in UK protocol is that this is - or at least was- only offered if Remicade failed ... You could not go straight onto Humira). Injections are quick and you really do get used to them ... Not as painful as the disease. I already inject blood thinners daily so once a fortnight is not that big a deal ... Yes it does hurt but short lived.

For ease Humira ... Haven't experienced the third you listed. All have an array of possible side effects so a case of chose your poison.

Good luck.
Posted 2/25/2015 9:16 PM (GMT 0)
Different doctors have different preferences on how they do things. The GI I had at the time was opposite from what yours is saying. I was put on Remicade first then she told me if it didn't work she would put me on Humira. When the Remicade failed I was totally done with the disease and opted for J pouch surgery instead. Humira seems to work better on Crohns patients.
Posted 2/25/2015 9:21 PM (GMT 0)
Some find it easier to ice the injection area prior to administering. Humira is injected into the fatty area on the belly or thighs. Those who experience the most pain have little fat reserves, due to uc induced weight loss. A nurse will show you how to the first injections. Good luck,
Posted 2/26/2015 1:29 AM (GMT 0)
I went for simponi first for ease of use. I figured, I had heard remicade took long to administer, I heard humira was painful so simponi it was! I would imagine if you respond to one, you may respond to any or all of them. I didn't respond to simponi and i didn't respond to remicade either :( good luck!!
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