I was diagnosed in 2002 with UC, had a total colectomy and reversal to a j-pouch in 2007, but was recently diagnosed with Cronh's. Likely mis-diagnosed from the start, yay... I've been flaring lately and have had to go back on Prednisone for a quick fix, but I need to get off it because I was steroid dependent for over six years straight around surgery time. My doctor is now saying I need to go on a biologic as 6MP hasn't been effective for me. I'm worried that I'm going to get a ton of side effects and risk harm to my j-pouch when I go on them. My doctor is recommending I try Entyvio first, but Remicade, Humira, and Stelara are all options.

Has anyone with a j-pouch gone on any of these biologics and what kind of side effects have happened since starting one or any of these? I need to make a decision quick because I've been on Prednison for a month and need to get off it.

Original Post

I have been on Remicade for over 3 years. No side effects- none. Cleared up my Pouch inflammation but didn’t prove quite as effective on the inflammation in the neoterminal ileum. I have an indication of Crohn’s Disease like you, after being UC pre op. That doesn’t really matter because either treatment works or not on the inflammation regardless of what you wish to call the inflammation. To me inflammation of the bowel is inflammation of the bowel. It’s like the difference between a category 1 or 2 Hurricane, who cares, you have to stay inside either way.

Why is Entyvio being recommended first over Remicade? There is more data on Remicade’s effectiveness in J Pouch inflammation than Entyvio. The only advantage of Entyvio that I am aware of is shorter infusion time (30 minutes as opposed to 2 hours plus)- which enables the Doctor to make more money off patients because they can infuse 4 patients in the same time as 1 on Remicade. Ask for the doctor’s reasoning. This question came up in another thread where Entyvio was recommended over Remicade and I asked the poster to get an explanation on it because I suspect it has more to do with profit than effectiveness. She didn’t post back. Too many people here accept statements of the Doctor without asking any questions. In my case I didn’t have to because my doctor gave me his reasoning with his recommendation- the empirical studies.

Remicade is quite expensive ($10,000 per infusion) but the good news is Remistart, a manufacturer cost savings program, pays everything except $5 per infusion and insurance companies view those payments as out of pocket payments towards my deductible. Thus my $5000 deductible was satisfied with one infusion with my out of pocket cost being $422, the $417 infusion time and $5 copay. Haven’t paid a cent since because my $6500 maximum out of Pocket was maxed with one infusion. Even though I literally only paid $422. 

Please specifically ask for the medical and scientific reasoning on Entyvio over Remicade and post. Thanks 

I've been through the rounds with first a UC diagnosis and now Crohns.  (Some of us are just lucky that way!) Anyway I have also been down the biologic path.  My doctor started with Humira and I did that for a couple of years, but it didn't really help the inflammation. Next, I was on Remicade, but unlike CT, I had a terrible reaction to it.  (Severe muscle and joint pain plus I tried to pass out after the second infusion. I just felt terrible after each infusion and it lasted for a couple of days. ) I'm currently on Entyvio and will see how that is working after my next scope in April.  So far I've not had any reactions to it.

One advantage I see to Entyvio is that it targets the gut rather than all across the body. I must admit I also like the shorter infusion time.  

Whatever biologic you choose, make sure you ask a lot of questions so you feel comfortable with what the on going plan will be.  All of the above biologics have programs to help pay for them. Make sure you ask about them with your infusion or injection provider.

It may be that Doctors are favoring Entyvio over Remicade due to less side effects and/or more targeted mechanism of action, although I would like to hear if that is in fact the reasoning of BS's doctor.  My doctor did mention to me that Entyvio has a different mechanism of action than Remicade.  I am looking at Entyvio as my "relief pitcher" in the bullpen should I ever develop antibodies against Remicade.

Thank you guys for both responding. My doctor isn't picking Entyvio over other ones for me, but rather recommending it first because it's a "biologic that should have less risk of side effect" after I stressed my hesitation for biologics in general. He said it targets the body in a different way which leads to less severe side effects, but I don't know how proven it is right now. I was recommended Remicade before my surgeries, but I was hesitant to start because it was somewhat new at the time and I didn't know how well it would work over time as I was only 22 at the time. Due to insurances still factoring in pre-existing conditions, I chose to have surgery while I was still on my parent's insurance. I want to trust Remicade now because it has been around for a long time and is proven to work with most, but I'm worried about getting side effects or making things worse for myself. I already feel like I'm hanging by a string with the side effects I've had from j-pouch surgery, so I don't know that I can take on any more issues. I'm trying to make a better life for myself with going on biologics, but I'm hesitant because I don't know what I'll do if they don't work.

BS,

Everyone has their own comfort level with medical treatment but in my mind the IBD patient’s primary concern should be choosing a treatment that will be effective and a secondary concern should be side effects. I would never not try a potentially effective treatment due to a fear of a side effect. The only thing you have to fear is fear itself, to quote Franklin Roosevelt, and fear shouldn’t drive treatment. Maybe Remicade will cause side effects and maybe not, if it does you deal with it. If you don’t treat the Crohn’s, and you sound fairly young, you will have problems down the road and have to have surgeries. That’s not what you want. I have had IBD for 46 years and I always tried to treat it as aggressively as possible, and let the chips fall where they may. You sound a little gunshy about biological drugs, but if you haven’t taken them it’s an empty slate and there is no basis for the fear until there is a basis for it. 

Good luck-

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×