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Nervous about starting biologic

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Ulcerative Colitis
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Posted 10/18/2020 2:10 PM (GMT -7)
Hello everyone. I haven't posted here in a while. I was diagnosed with proctitis two years ago. I was on Canasa and Apriso for a while, although they both started to fail. I'm on my third prednisone taper in two years to manage a severe flare.

Over the past six month, I tried to treat my proctitis with supplements and the IBD-AID diet. But my condition got worse and worse until I ended up in the ER two weeks ago needing a blood transfusion. I learned that my proctitis has evolved into colitis.

My doctor is trying to put me on Entyvio, but we are concerned that insurance won't cover it.

I don't want to allow anymore damage to my colon, but I'm terrified of Remicade. I don't like how systemically it works. I'm scared of the cancer risk. I'm scared of having my whole immune system suppressed.

If I am forced to go on Remicade, can anyone give any words of advice?
Posted 10/18/2020 2:39 PM (GMT -7)
Remicade does not suppress the whole immune system. It targets tnf alpha which is just one component of the inflammation response. Entyvio is supposedly gut specific but it also affects the respiratory tract and is associated with increased respiratory infections. In either case, both drugs are well studied and the chances of adverse reaction are small. Three rounds of steroids probably does more damage than 10 years on a biologic...
Posted 10/19/2020 1:23 AM (GMT -7)
I was on Remicade for many many years...over 20, and never had ANY problems until I developed antibodies. I'm now on Entyvio and doing well. I will tell you that BlueCross/Blue shield made certain that my gastro doctor tried me on other biologics before approving Entyvio. By the time they finally approved it, I was hospitalized for two weeks. Since then, and after a long bout with Cdiff….all has been GREAT. Best of luck to you and tread on without fear or anxiety.
Posted 10/21/2020 11:26 AM (GMT -7)
I've had UC since 1975. I've been on Entyvio for 2 1/2 years and most of the time it has been great to have a normal life again. The studies that I have read show that for UC patients it works as it says, gut specific with no additional infections, unlike broader spectrum immuno-suppressants. However, for Crohn's patients there are some increased numbers for other infections. For me it was like night & day. Just to be clear, daily low doses of 6-mp and 3g of mesalazine have been going alongside the Entyvio. I had a normal haemaglobin count in April 2020 for the first time in the last 20 years. My consultant pushed me onto Entyvio instead of Remicade because of the risks of other infections from Remicade.
Posted 10/22/2020 7:34 AM (GMT -7)
My doctor chose entyvio for me because it was more gut specific and Medicare Covered it with no issues. I’m so thankful me GI talked me into it because it’s been life changing. It’s as if I don’t have UC and am living a normal life again. I do not get more colds than I used to. I have had 2 bladder infections this year but I am prone to them anyway. I stopped taking Apriso this year because it never got me into remission anyway and I’ve had no issues being without it. It’s normal to be scared — I certainly was — but biologics can be a game changer for those who respond to them.

Another high point for entyvio is the quick infusion time — only 30 minutes!
Posted 10/30/2020 6:26 AM (GMT -7)
@Flowersgal- Do you have to take any other medication like 6mp so you don't develop antibodies?
Posted 10/30/2020 6:29 AM (GMT -7)
I was on Remicade for about a year, I don't think I noticed any benefit from it, but I also noticed no side effects from it. I guess it's not totally impossible that delayed side effects could hit in a few years down the line? I have no idea. I was concerned about going on it too though and as far as I know personally no side effects for me anyway.
Posted 10/30/2020 6:42 AM (GMT -7)
I'm 8 years on remicade, no side effects, and been in a Remission the majority of that time. I was initially worried too, but turned out to be unjustified worry.
Posted 10/31/2020 10:00 AM (GMT -7)

PamSmith said...
@Flowersgal- Do you have to take any other medication like 6mp so you don't develop antibodies?

No other meds. My GI ran a blood test early on that showed I would not respond to the 6mp class of drugs. I think it said I was a non-metabolizer or something like that. I did take methotrexate for a few months but then we discontinued it.
Posted 10/31/2020 10:23 PM (GMT -7)
Your risk of getting cancer (colorectal cancer) from untreated IBD is higher than the risk of cancer (lymphoma) from Remicade.
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