Humira to Entyvio?

[ag55]

I have been on Humira for 2 years and am doing well. No side effects. I was originally diagnosed with UC in 1998 and had surgery for j-pouch 17 years ago. After surgery, I still had flare ups and was then diagnosed with Crohns. My doctor now wants me to start on Entyvio. He said it was because of the possible long term side effects of Humira and that Entyvio was gut specific. There was no change in lab work that he mentioned to me. The resident commented that they're not sure how well Entyvio works for people who have had their colon removed.

I see him again in a couple of weeks so I'll have more questions now that I know more about Entyvio. I had asked him about Entyvio side effects and he said there were no more than Humira. I've had none with Humira so far and the side effects people write about from Entyvio really concern me. How do you even go to work with these type of symptoms?

I've had this disease for 39 years and there aren't many options left so I don't want to switch as long as the Humira is working. I am pushing back on this as I'm doing well and after reading about all the awful side effects from Entyvio, I'm really hesitant about switching. Also don't know if my insurance will cover me for Humira again if the Entyvio doesn't work for me and I have to go back to Humira. I've already been on Remicade which stopped working for me. Has anyone else been through this?

 

[my little penguin]

Not sure of the issue DS has been on humira for 4 years
Entivyio works for some but not all and take 14 weeks minimu to be effective
If humira is working not sure why they would switch
Ds GI doesn't switch unless a med stops working or is causing that particular patient issues

Good luck

 

[ag55]

Thanks. Will have to give this more thought and talk to my GI some more but my instinct is to stay on the Humira for now.

 

[DougUte]

ag55 I just made the switch from Humira to Entyvio. Humira, at every other week injections, had become ineffective. I did not have anti-bodies, when the Prometheus Test results came is Humira was at a 2.2 level, should be a minimum of 5.0. My GI switched me to weekly injections, but my insurance company would not approve that change. I ended up having to go to a new med, and Entyvio was the one we picked, because it is gut specific.

If I would of had a choice I would have stayed with Humira because weekly Humira was working. I am really mad about the insurance company forcing me to change meds. I have had one side effect from Entyvio, and that is fatigue. I have been told that it will go away over time. I certainly hope so. One thing to remember, it is usually people who are having problems that post in these forums. They are looking for information and support. The people on Entyvio who are not suffering side effects are less likely to post here.

If I was you, I would stay on Humira as long as it is working for you. Stopping a biologic and then coming back to it later can result in anti-bodies being built up. Don't want that, especially if your treatment options are becoming limited.

 

[ag55]

Thanks for your reply and advice DougUte. I have been on weekly injections for more than a year and my insurance covers almost all of it and Claim Secure through AbbVie Care (Humira) covers the rest so I have been fortunate not to have to worry about that. I'm sorry to hear your insurance would not cover you. It's wrong that an insurance company has the power to decide on the right care for you instead of your GI.

As long as the Humira is working for me, I think I'm going to keep with it for now.

 

[crohner000]

I have been on both but neither worked for me. I do think Humira worked a little bit, but not enough and I really didn't like it. It gave me itchy injection site reactions and I feel like I had a lot of random immune system related problems during the time I was on it (boils on my skin, infection in my nose, wart). Entyvio never did a thing for me even though it seemed really promising.
For me I would be very nervous to be taken off of something that was working, just because the options are so limited and there's less of a chance of the same biologic working as effectively a second time.

I also wonder, since Entyvio is gut specific, what if you had symptoms outside of your gut that the Humira is actually keeping at bay? I developed a lot of join pain while on Entyvio (again, it wasn't working at all, so the joint pain was more like untreated Crohn's than a side effect).

It sucks that the medications that help us can hurt us in other ways in the long term. It's a lot to consider! Wishing you the best.

 

[ag55]

Thanks crohner000. The Humira does help with my joint pain so that is another reason I don't want to stop it.