Entyvio Questions

1. Have your insurance companies allowed it?
2. Is it pricier than Remicade?
3. If you're on it, did your insurance company require you to fail all other meds first (Remicade, Humira, Simponi, Cimzia)?
4. How are you doing on it if you're taking it?

My pain meds are working less lately, and this is definitely not an optimal way to live. I will set up preps for surgery as a last resort, and switch to another med. Entyvio looks promising because it is less systemic, which is good for me since my body is so sensitive.

Thanks.

As far as insurance, all that is going to count is how YOUR insurance covers it, or requires trying other drugs first, or whatever.

The research numbers show a little bit less chance of remission then Remicade, but less side effects.

Thanks guys.

Soy, I'm spooked to see what happens given how horrible the flare was that put me on Remicade, but I have thought of that approach. I wouldn't want to do it without being back on at least Pentasa though.

I'm a big fan of less is more, even if I find it hard to follow!

I crave sweets often. I don't necessarily eat them all the time, but I do Crave them. I like honey in my oatmeal, and to drink lemonade. Often late at night if I eat a sweet it puts me right to sleep.

I usually don't load up on sweets though, except if I'm very stressed I will turn to them sometimes to lessen the pressure.

Honestly, if I didn't have UC I would have more energy to be healthier, and would actually eat better I think!

Thoreau

I saw my new doc yesterday and love her - she is so knowledgeale and easy to talk to etc.  Asked her about entyvio as I have the same remi pains as you.  We are first going to do the Lupus tests and antibody tests and look at ct scan.  But, her opinion of entyvio was it is only as a last resort.  She said that only 3000 patients have really been followed and she is concerned about the possible fatal brain side effect.  She said she had a few crohns patients on entyvio, and they are watching them very very very closely.  They were only on it as it was a last resort.  She did not recommend entyvio until there is much more knowledge of it with real patients.

I really feel for you and the pains and was hoping for a miracle like enyvio too. 

I think I will follow soys advice at this time and try to work on the stress aspect.  My doc told me that stress affects cortisol, which affects UC.   

Pink, From what I read, no one in the trial got the PML and the company assured the FDA Task force that the drug was not the same as the one that cuased the PML.  But, my GI said she was not comfortable with so few people having had the entyvio so far.  She pointed out that lots of thing come out about drugs as they get more experience.  She did say they are using it for those patients that have no other options.  That is the way FDA approved it - only if nothing else worked.  I am as disappointed as  many others.  The remi pains are so terrible it makes you wonder if surgery would be a better option.  You are lucky to be going to a GI who has some first hand experience with the trial patients.  Your GI will probably be more comfortable.

Pink1

Wish you the best with entyvio. I imagine someday I will end up on it too. Doc wants to try at least this last remi infusion before making any changes. She prefers I stay on remi as it is weight based (I am overweight) and none of the others are. I'm so glad she at least is explaining the why's, unlike my previous GI. It is a lot easier when you at least understand somewhat why they make the decisions they do.

happyday said...
Thoreau
I saw my new doc yesterday and love her - she is so knowledgeale and easy to talk to etc. Asked her about entyvio as I have the same remi pains as you. We are first going to do the Lupus tests and antibody tests and look at ct scan. But, her opinion of entyvio was it is only as a last resort. She said that only 3000 patients have really been followed and she is concerned about the possible fatal brain side effect. She said she had a few crohns patients on entyvio, and they are watching them very very very closely. They were only on it as it was a last resort. She did not recommend entyvio until there is much more knowledge of it with real patients.

I really feel for you and the pains and was hoping for a miracle like enyvio too.

I think I will follow soys advice at this time and try to work on the stress aspect. My doc told me that stress affects cortisol, which affects UC.

Thanks HappyDay. I spent a lot of time last year dealing with the search for the cause of these pains. I ran the antibody test for Remicade, and nothing was found. I saw a Rheumatologist, and he ran some muscle inflammation tests and such, at least ruling out Fibromyalgia. He must not have thought there were any Lupus like effects happening either.

What is the CT Scan for?

Have you tried Humira, Simponi, or Cimzia?

THOREAU

The ct scan was for the renal cell carcinoma I had - removed part of my kidney 2 years ago.  Its funny that they found the kidney cancer on an MRI I had done for the UC.  It will show inflamation or stool accumulation throughout the colon.  My biggest problem since being on Remi, besides the pains, is constipation (they call it) or blockage (I call it). She is also doing the Lupus tests - ANA, DNA, and something I am not familiar with Histone autoantibodies (histn) as well as the inflammtion markers CRP, ers. 

I'm happy to give you full list of lab work they ordered when they tested me to diagnose severe joint pains, if you want them. That was for adverse reactions to Remi - very serious and debilitating and takes months to recover from. (I wrote some about it in my thread on severe joint pain, stopped remicade, ok?).

Note that all those tests are looking for different things going on and distinct from two other possible causes of joint pain: One is for Remi and development of antibodies. That's a separate thing that may or may not produce joint pain. Easy specific test to see. (More Remi makes it worse & does nothing for UC if high antibodies show it's doing nothing in your body). Then there's always a possibility of extra intestinal pain w/ UC - IBD more generally. (And shortening the Remi interval has helped at times for patients.)

I'm worried some of you have what I have and am recovering from. The first thing.... Anti TNF induced lupus & neuropathy. And more just Remi creates more damage to joints, muscles, nerves, tendons.... (Apologies for turning this thread back to that but it's directly in response to your posts).

It turns out that Entyvio also caused joint pain for some in the trials. I am so disappointed to hear that!!! I would think of that as a fourth thing - the drug having a side effect. (Rather than causing lupus- like symptoms, etc but it's not clear yet....) By the way, I wonder if entyvio causes constipation too? I had that a lot on Remi and it was so uncomfortable but tolerable and worth it to control flare....

hey happy -

just an fyi - I've had serious pains in my hands for as long as I can remember - from uc ! as my body continues to heal (geez it takes a LONG time) my hands are becoming my friends again - I'm actually able to do a few things now

so hang in there - it does get better !

Contentprof:

So where do you stand with things now? It sounds like you're off Remi, and you are getting better overall. You're worried about UC symptoms still, but are hoping for the best? In your other thread you mentioned either methotrexate, or Entryvio. Have you chosen one of those?

After reading back through your last thread, it looks like all the Anti-TNF's may cause the same horrible pains. At that point then I feel that I'm even more limited in my future choices. I wonder if I could experiment with 6 mp again... I haven't gone on that in 4+ years I don't think. Back in 2007 I was on it and in complete remission.

There are a lot of times where I'm almost ready to just have the surgery and be absolutely done with it all. The only problem I still have with it is that it is so finite. There is no getting your colon back after doing it, even if all of the sudden a much better treatment option becomes available...