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Starting biologics, any advice?

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Ulcerative Colitis
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Posted 12/22/2017 2:59 AM (GMT 0)
After my appt yesterday and talking with my GI doc, we talked about moving to Biologics or Immunomodulator. I have been on steroids since Oct. and even though I have not had side effects (yet), he wants me off of them, sooner rather than later, and has already started to taper down. (which I understand), He agrees with me that I am not tolerating the Lialda and replaced it with Colazal (9 750mg pills a day) He did this, since with the holidays around the corner and my sons bday, I wanted to push off starting for a few more weeks, and he reluctantly agreed, he is not really happy that I am trying to stay off Biologics. When I asked about rectal medication, he said he didnt think it would work and it wouldnt be worth it to try.

He said he prefers Biologics but gave me a list of both and told me that we have to make a choice by my Jan 8th appointment. But honestly the side effects honestly scare the crap out of me. Im 33yrs old and have 2 boys under 11.

Ive read positive things about Remicade, Entyvio and Humira, but I havnt really saw the bad, or ugly side of these drugs? Does anyone have any good links that would provide both good and bad of each? I have looked some, (probably not enough) and cant seem to find much. I just want to be as informed as I can be, before making this jump. Also what are your personal experiences with any of them?

Thank you so much, Ive lurked on the forum for months before joining, and everyone one seems so nice and helpful, its nice to not feel alone in his uphill battle.
Posted 12/22/2017 3:18 AM (GMT 0)
Welcome to the forum (but not to the disease itself! ;-D) I'm fairly new to UC myself, only about 18 months since diagnosis, but since I was steroid-dependent most of last year, I started Entyvio infusions on March 29. Honestly, it's given me my life back. Basically I am now symptom-free. A colonoscopy in Sept. showed no visual inflammation, but one area of microscopic active colitis. And that's after 6 infusions. It does seem to give me headaches, which are pretty much a daily pain in my head, let alone my a**, but even though they irritate the heck out of me, I still think the trade-off of no UC symptoms are worth it. The entyvio infusions are very easy, only 30 minutes every 8 weeks, after the 3 loading doses. But it is a lot more expensive than Remicade, so that might be a factor, depending on your insurance.

I will, however, call your dr's bluff about rectal meds not being worth a try. I'm sure everyone else on here will chime in about that, too. I used Uceris rectal foam in the early stages of my infusions, and found it very helpful and soothing to my gut. I also used Canasa suppositories, although everyone here swears the enemas are more helpful, I haven't tried them.

Good luck, and let us know what you decide. Ipoop has great facts and details about the safety of biologics, and I'm sure he'll chime in sooner or later.
Posted 12/22/2017 3:53 AM (GMT 0)
More and more Gi’s Are taking a top down approach and starting with biologics. In my experience, my GI combines meds to achieve remission, then starts slowly reducing doses of some to ultimately work toward dropping some (never all). It’s a bit of a game to figure out what is needed to maintain remission.

Insurance may decide the first biologic you try. You’ll also want to talk to your GI about any prep that might needed before you start such as blood work, TB tests, possibly vaccines. Finally, it’s good to understand frequency of labs, etc too.

Good luck!
Posted 12/22/2017 8:29 AM (GMT 0)
"When I asked about rectal medication, he said he didnt think it would work and it wouldnt be worth it to try. "


dipsh!t doctor alert !
Posted 12/22/2017 10:32 AM (GMT 0)
Rectal meds have always worked like a charm for me. Rectal inflammation? Pentasa suppositories! Some bleeding? Salofalk 2G enema does the trick!

So I dont have a clue what this doctor is talking about.
Posted 12/22/2017 5:03 PM (GMT 0)
Tell us a bit about your current UC symptoms: number of bms a day?, how bad is your urgency?, are your stools formed or runny?, and passing any blood?

I've been on remicade since 2012, it gave me remission and I have yet to experience a side effect from it. In fact, it is the only UC medication to put my UC into a remission. If you need it then many of us have had good luck with it and Humira.

Everyone is a bit nervous when starting a new class of UC medications, myself included. What helped me was taking a look at the actual risks versus the benefits. The Crohn's and Colitis Foundation of America has some great information that takes a deep-dive into the actual odds of side effects with biologics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

The top-down approach is a lot more common these days. The idea is to treat your UC quickly with the strongest medications to prevent your UC from spreading in extent and severity, and give you the best odds of being stable and not relapsing. It's all about quality of life, and trying to put out UC fires when they are small rather than waiting until they are raging infernos (when they're much harder to control). Not everyone agrees with the top-down approach though.

If you disagree with top-down, then you could max out the anti-inflammatory medications before going up the medication ladder. I'd say to your GI: give me one month on the maximum dosage of mesalamine and see if I improve, and if I do not then let's try the stronger medications. Balsalazide Disodium comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily. You'd add a nightly, 4.0 gram Rowasa enema to it. I beleive most

Immunomodulators are being less frequently used. They are generic pills you take and require regular blood monitoring. The bigger concern with immunomodulars is they take 3 months to work and are mostly blamed for the lymphoma risks. The biologic clinical studies where people got a lymphoma were all concurrently on immunomodulars. No cases of lymphoma from a biologic only.
Posted 12/22/2017 8:15 PM (GMT 0)
Thank you for the responces. Right now i am on 40mg of pred. And just started 9 750mg of Balsalazide yesterday. Im having 2 - 3 BMs a day that are soft and clumpy somtimes almost formed and mild urgency. With no blood that i have noticed and mild cramping. My last labs showed inflamation markers down from over 200 down to 54 in 1 month.

My doctor seems like he is 1 to start from the top. He has been pushing biologics since my first appointment after my colonoscopy that diagnosed my UC, in October of this year.
Posted 12/22/2017 8:54 PM (GMT 0)
Remicade was a life saver for me.

I was in bad shape and getting worse and ended up in the hospital for a week. Remicade is what pulled me out of that nasty flare and gave me my life back.

Unfortunately, I was one of the few to develop Drug Induced lupus from Remicade so I had to discontinue it.

My advise would be to listen to your body if you start biologics, tell your doc what side effects you are experiencing. Most likely it will do wonders for you like it does for most people.
Posted 12/22/2017 11:26 PM (GMT 0)
My doctor wanted me on Entyvio because it is more gut specific. I liked the sound of that, but my insurance required me to try Humira first. I am also on 40 mg of Prednisone. We are not doing Humira again because I broke out into Hives that evening after taking my loading dose, and continued to for about 48 hours. Because of that, my insurance will now cover Entyvio. I am ineligle for mesalamines because I had acute pancreatitis and hospitalization for that from Balsalazide disodium. I was heading into a bad flare anyway, and had just come to terms with the idea that I was going to have to move on to Biologics. It does kind of sound like you are responding well to what you are doing currently. Ultimately you have to be comfortable with what treatments you do, but for me, my flare outweighed any concerns of side effects. I think the one dose of Humira did help some. I got a cold sore (sign of lower immune for me) and I am at a similar spot as you on times a day. Prior to, I was going 9 to 15 times a day. I am similar age as you with three kids, 12, 10, and 6. It is extra challenging taking care of kids and be sick, so I understand your delima. At this point if I wasn't so run down from the weight loss and muscle wasting, I think I would feel pretty good. Well, besides the Prednisone side affects that really started kicking in more this week.
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