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Starting A Biologic Soon and Concerned About Side Effects... Any Personal Recommendations or Advice?

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Ulcerative Colitis
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Posted 3/14/2019 6:46 PM (GMT -5)
After trying to avoid as much as possible having to take a biologic, I think that I have come now come to that point in my treatment plan. I have currently been treating a flare up since last August. Prior to then, I was only taking Apriso, but my doctor eventually switched me to the generic version of Lialda and prednisone. While the prednisone seemed to work, my bleeding continued after I was weened off the medicine. I had a colonoscopy a few weeks ago, which indicated I still had bleeding ulcerations. He put me back on Apriso, but added mesalamine suppositories until I see him next. The plan is to try Humira now.

I have a lot of apprehensions about taking a biologic, as I have no prior experience with them before. The side effects that may occur from taking biologics (risk of lymphoma/cancer, greater risk of TB, hair falling out, etc.) are rather frightening to me.

Does anyone know which is the safest biologic available (or has the least possible major side effects)? Does anyone have any thoughts, opinions, or experiences with Humira, or biologics in general? What can I expect to feel within the first weeks of treatment with a biologic as far as side effects (tiredness, flu like symptoms, injection site pain, etc.?).

While I trust my doctor, I really don't feel so trustworthy of western medicine and how big pharma and insurance companies influence the treatment decisions that are made (sorry to bring this political bit in, not really my focal point). Anyhow, I really want to make sure I am making the best choice in my treatment with the options available by hearing opinions from actual patients. Any help is appreciated!
Posted 3/14/2019 7:07 PM (GMT -5)
Hi when a biologic works for you the difference is like night and day compared with how you suffered before. The chance of side effects is small, although there is an increased risk of infections, and most serious side effects are associated with concurrent use of a biologic with thiopurines. I have taken 2 biologics and had no significant side effects from either except maybe 1-2 extra colds per year. As someone who dabbled in "alternative" medicine i eventually came to the conclusion that western medicine is the ONLY thing that is keeping me alive. Big pharma is not evil, it's just a business where the people working in it want to make a profit. Biologics are difficult and expensive to engineer, although I imagine in the coming decades the prices will fall as there will be more competition between the different brands. Can the system be improved, yes certainly, but sometimes these drugs are the only choice you have,.unless of course you opt for surgery. Good luck!
Posted 3/14/2019 7:08 PM (GMT -5)
Ps forgot to say, supposedly entyvio is a "safer" biologic because it's more targeted at the gut than the other ones so less systemic immunosuppression.
Posted 3/14/2019 7:24 PM (GMT -5)
No surprise that an oral mesalamine like Apriso or Lialda can gradually dissipate, all meds do, but that is why many here can maintain longer remission by reinforcing oral mesalamines with rectal enemas, (not suppositories). Not only are enemas very effective but they also have the fewest side effects. Take them regularly at first but hopefully soon they will be necessary only when needed.

I would make sure that your doctor answers all your questions. For example none of the biologic drugs are available as a generic version, so they are all very expensive, ranging from $2,000 to more than $5,000 per month in maintenance.

Of course biologics have much stronger side effects, e.g. from now on you may be forced to be much more careful avoiding sunlight at the beach. And it is best practices that once on biologics you will probably remain on them at least for a very long time. But as poopydoop says, sometimes you have no choice.
Posted 3/15/2019 1:59 AM (GMT -5)
I have been on Remicade, Humira, and Entyvio. I had no significant side effects from any of those.
Posted 3/15/2019 4:15 AM (GMT -5)
I was on Entyvio and Humira -- no side effects from either. I LOVED Entyvio but after 1.5 years of remission my body started metabolizing it too fast and I lost the therapeutic levels even after increasing the frequency.

Switched to Humira and had an initial response after the loading doses but never reached therapeutic levels even after going to weekiy shots.

I am starting Remicade tonight. I have my fingers crossed that this one is the one that will work for many many years!
Posted 3/15/2019 8:55 AM (GMT -5)
"(risk of lymphoma/cancer, greater risk of TB, hair falling out, etc.) "
I had lots of "I will nevers" until they became necessary, I will never take prednisone, I will never take 6mp, I will never take remicade, and I took them all due to necessity. I too was scared spitless before starting these meds, as things like lymphoma are scary. What helped me greatly was looking at what are the actual risks versus benefits of taking them? The benefits far outweigh the risks. There's about 65% odds that humira will improve your UC symptoms. That lymphoma risk, it's 4 in 10,000 (or 0.04%) which is hardly a reason to loose any sleep over it. They screen you for TB before starting, your risk after starting isn't really higher at all. All UC meds, from the apriso you are on now, to the immunomodulators like 6mp/imuran, to biologics like humira have hair loss risks, despite them all having very different active and inactive ingredients, and different mechanisms of action. That leads me to believe that the flare causes hairloss and not the meds themselves. As you can loose hair during UC flares without meds too. Hair loss is usually about a 2-month delayed reaction to the worst of your flare, and hair regrowth a 2-month delayed reaction to recovering from your flare.

For a deeper dive into risk versus benefits, and the source of my odds, see this risks versus benefits transcript from the Crohn's and Colitis Foundation of America.

www.crohnscolitisfoundation.org/assets/pdfs/risk-and-benefits-transcript.pdf

I've been on remicade about 7 years now, I have achieved a remission, and I have had zero side effects from it. Remicade has been a real game changer for me. I've been stable and well managed ever since starting it, with only a few small and short blips of flares that are easily treated. Prior to remicade, I was 8-months into a flare from hell, 20+bms a day, near incontinence, accidents, etc etc. After remicade's full affect, I have 1-bm a day without urgency.

"Does anyone know which is the safest biologic available (or has the least possible major side effects)?"
Entyvio is a site-specific immunomodulator, suppressing only the gut-side of the immune system. Believed to be the safest. Humira, remicade, xeljanz, stelara, etc are all systematic immuno suppressors.

"Does anyone have any thoughts, opinions, or experiences with Humira, or biologics in general?"
Initially worrying, but fine when you feel better and do not experience side effects from it!

"What can I expect to feel within the first weeks of treatment with a biologic as far as side effects (tiredness, flu like symptoms, injection site pain, etc.?)."
With Humira, injection-site pain is possible, although icing the site beforehand helps. Injecting in an area with fat is better than going directly into muscle tissue. There's a citrate-free version of humira that is supposed to have less injection-site pain. Some report being fatigued after their biologic is administered, so it cannot hurt to have the rest of the day available to relax, be low-key, and take a nap if it becomes necessary.
Posted 3/15/2019 9:01 AM (GMT -5)

IamCurious said...
For example none of the biologic drugs are available as a generic version

This is no longer true. Inflectra is a biosimilar for Remicade, which is the closest thing to a generic available for biologic, and about 20% cheaper. People here have reported getting Inflectra infusions.

EU has a number of biosimilars available for all of the tnf-alpha-blockers and prices have been falling accordingly with competition among generics. A lot more of this will come there, and hopefully here, as well over the coming years.

Here's the FDA list of approved biosimilars USA:

Humira® (biosimilars adalimumab-atto/Amjevita, adalimumab-adbm/Cyltezo, adalimumab-adaz/Hyrimoz)

Remicade® (biosimilars infliximab-dyyb/Inflectra, infliximab-qbtx/Ixifi, infliximab-abda/Renflexis)

Not sure on availability of the others beyond Inflectra, but I expect to hear more about them this year by posters here!
Posted 3/16/2019 3:57 AM (GMT -5)
Remicade worked GREAT for me for many many years until I developed antibodies to it. Now...my insurance is balking at paying for another biologic. They are also denying Donnatal, which has been helping SO much with the spasms. Humira didn't work for me. I NEVER had any side effects from Remicade and it kept me in remission for over 5 years between minor flares. Honestly, I'm more afraid of prednisone than the biologics. Best of luck to you in finding the one that will work for YOU.
Posted 3/16/2019 10:17 PM (GMT -5)
I would say by far Prednisone is worse than the biologics. I had an allergic reaction to Humira, and am now on Entyvio. It hasn't gotten me into remission, but it makes life livable.
Posted 3/17/2019 1:51 AM (GMT -5)
I had great luck with Remicade, which was my first biologic, and have found Entyvio to be a little more challenging (but not much) - just feel a little wiped out after infusions is all. Remicade was not only easy to take but very effective for me, and I’d honestly go back on it if I could (I think we gave up on it too soon).

You’ll do great. I love the idea of taking medication once per month or 8 weeks instead of 2-3 times per day!
Posted 3/18/2019 5:11 PM (GMT -5)
Once a biologic is started, would it have to be continued forever or is there an endpoint?
Posted 3/18/2019 6:54 PM (GMT -5)
Any UC med should be used for as long as it works for you: mesalamine, immunomodulars or biologics. All intended as maintenance meds.
Posted 3/18/2019 7:35 PM (GMT -5)

iPoop said...
Any UC med should be used for as long as it works for you: mesalamine, immunomodulars or biologics. All intended as maintenance meds.

Yes, but if once you decide to get on a biologic, do you more or less have to remain on a biologic?

After all if you are on a mesalamine you can switch to other mesalamines or perhaps escalate to a biologic. But once you are taking a biologic we know we can switch to another biologic, but is it common to deescalate back down to mesalamines?
Posted 3/19/2019 3:11 AM (GMT -5)
I don't think I heard of anyone de-escalating from a biologic to mesalazines successfully. I have heard of people de escalating successfully from imuran. Ive also seen people (on this forum?) stop biologics after years of remission because their insurance denied it, and then go back into a flare sad
Posted 3/19/2019 9:04 AM (GMT -5)
The clinical recommendation in most countries is to NOT stop a biologic once on it, unless it stops working for you or you have adverse reactions. Why? As the start/stop/start process greatly increases the chances the medication will not work for you when restarting it.

It all comes down to antibody formation. Biologics are small blood-born proteins, and the immune system looks at them exactly as it does with other naturally occurring small blood-born proteins (that is viruses like the common cold). The immune system has two very aggressive stages regarding creating antibodies to those sort of proteins, first exposure is when antibodies are attempted, and second is upon weaning exposure (that is discontinuation) that a second attempt at antibody formation is tried. When we first get the cold virus the body tries to neutralize it with antibodies. If other immune defenses are successful, like raising body temperature, then dead and dying proteins are flowing through our veins which are easy targets for antibody formation. With biologics, antibodies mean you have a lot of side effects (body aches,flu body temps, etc etc) and the medication becomes less effective over time, or stops working entirely.

Not common to stop a biologic after ceasing a flare. I've heard some in the UK/EU doing this under doctor recommendation. Not a broadly accepted practice at this time.
Posted 3/19/2019 11:54 AM (GMT -5)
Question about biologics: so if you are on one for maintenance, and you get a flare at some point, then when do you decide to fix it with a course of prednisone,, can you, or must you try another biologic?
Posted 3/19/2019 12:30 PM (GMT -5)
We can have flares for a few different reasons.

1.) There's run of the mill flares, where they try prednisone for a couple months and change nothing. This works with biologics, as well as any medication we are on.

2.) There's disease progression, where you need stronger dosage or medications henceforth. Usually #1 is tried first and if you fail the taper then #2 becomes the likely culprit. This could be increases in your current med dosage, or might involve switching meds (a biologic etc)

With biologics, there's also a blood test that looks at medication-concentration at minimum (24 hours before next infusion/shot), and for the presence of antibodies. It's a dosage guide, and diagnostic tool that helps you make more informed decisions based on what is going on.
1.) If the medication minimum concentration is too low, they up the dosage and/or frequency to regain response.
2.) If there's small amounts of antibodies, they increase the dosage and/or frequency to regain a response.
3.) If there's high amounts of antibodies and low concentrations of med they switch you to a sister medication of the same mechanism of action (between remicade to humira to simponi which are all tnf-alpha-blockers).
4,) If there's high concentrations of the med, no antibodies, and no response to that med then they switch you to another biologic with a different mechanism of action. As you've essentially failed that class of biologics entirely. From the TNF-alphas to something entirely different like entyvio (madcam1), xeljanz (jack-inhibitor), or stelara (affects one or several of the IL's, forget which) all of which use different means to tackle inflammation.

So, a long-winded way of saying: Yes sometimes they switch you among biologics, other times they can simply increase the dosage of your current med to regain a response. The blood test isn't always essential, they can simply increase the dosage as an experiment for a couple months and see if that helps, and keep/switch meds based on how you respond.
Posted 3/20/2019 12:26 PM (GMT -5)
I’ve taken Humira (only very mild response) and Xeljanz (terrrible GI symptoms, had to stop; also not technically a biologic). On Remicade now, which seem to be working, so far.

I wish the Humira would have worked, as I had zero side effects and it was super easy. The Remicade makes me a little tired for about 48 hours after my infusion, and one liver enzyme is creeping toward the high end of normal but nobody is worried at this point. Although I’m definitely still recovering from my year-long, nightmare flare and am nowhere near remission, I feel so much better I’d be willing to tolerate a host of nuisance side effects for the benefit I’ve seen.

For the riskier, “scarier” side effects, just keep two things in mind:

1. The actual chances of experiencing serious or imperiling side effects is relatively minuscule.

2. Your choice is between the imperiling symptoms of a chronic disease and a chance at a more normal life. Your choice is NOT between potentially risky side effects and perfect health.

I’ll gladly assume the bad risks for a chance to live my life, because living my life with an active UC flare has not been an option.
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