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My doctor is having me start ENTYVIO and I am wondering if anyone else has started it yet?  If so, what has been your experience so far?  So far I have tried Remicade and Cimzia without much improvement, my doctor said that ENTYVIO works differently so I am hopeful that it will help me. 

Reply posted for sj885.

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 Reply posted for sj885.

Hello you said you started the treatment in July? How are you doing now? My doctor wants me to start on it

 Reply posted for mrmintmccool.

I use the digeze oil blend. I take a few drops in a shot of water in the morning and the same at night. Since I startes that I have been able to stop my meds. I hAve gained weight nack and I rarely have a flare up.

 Reply posted for mrmintmccool.

Hi, thanks for your reply.  I am actually signed up as a distributor for Young Living as well although I haven't logged in for a while... I like the peppermint oil for muscle pain and the lavender oil for relaxation but I haven't really used the oils for other things.  Which oils do you use and what do you use them for?

 Reply posted for crohnsdiag.

In response to the question about how I learned I had drug-induced lupus:

I had complained for months and months about recurring muscle and joint pains and increasingly frequent and severe bouts of exhaustion.  My GI doctor did not think this was from the Remicade, but my spouse did.

Ultimately, my internist ordered the test for antibodies against Remicade (called HACA), which came back showing I had severely high antibody levels against the drug, requiring me to discontinue Remicade treatments immediately.  

In the meantime, I was also referred to a Rheumatologist who ordered tests for anti-dsDNA antibodies, anti-histone antibodies, and complements C3 & C4.  My results showed very high (bad) levels of antibodies on the first two tests and normal levels on the complements test.  From these results and his examination of me, plus my symptoms (which also included being wakened frequently at night with pains in hands, feet, back, neck, itching arms, etc.), the Rheumatologist concluded that I had drug-induced lupus.  The diagnosis was confirmed when months after discontinuing the drug, the bad antibody levels started to come down.  The good news is that drug-induced lupus is not permanent.

Prometheus laboratories in L.A. developed the test for antibodies against Humira, which became available in August of 2013.  After two doses of Humira in March of this year, my doctors conducted this test and found I had developed adverse antibodies against Humira as well. 

I recently called Prometheus hoping that they were developing a test for antibodies against Entyvio, as I think I may wind up on it.  They said they need enough participating doctors and patients taking Entyvio in order to conduct studies and develop the assays for an antibody test.

I would love to see CCFA get involved in helping with this effort.  Any suggestions about that?

 Reply posted for sj885.

I start ENTYVIO next week.....Remicade stopped working after 8 years....Then Humira....It stopped after 7 years....I have a recurrent Crohns directly on my stoma...I had my colon removed 19 years ago....Many recurrences, and never saw what Crohns looked like until it came on recently on my Stoma.....

I should be able to get a Birds Eye view of how it is working however...As I can see the active disease and its uglyness directly on the intestine that is exposed on my stoma....

I am going to take photos of the Stoma the day of the first infusion, then every 30 days.....I should be able to see the progress directly with out any PLACEBO EFFECT......

 Reply posted for working 4health.

Wow your story is sounding like mine. My whole body has never been the same since humira and my shoulders from serum sickness on remicaid. I was told it wasn't lupus based on a lab test but have never heard of the antibody test. I am getting older finished college and worked for over 22 years without really being able to do anything else but how sick I have gotten since it is getting really hard. I don't know if it is getting older or what but my mind is even exhausted. I posted in the treatments blog my story titled worse after biologics hoping to find others hopefully we can continue to compare. I did try 5th biologic Stelara but was scared so far so good but I wonder if I end up even worse in the end. The decisions are never easy.

 Reply posted for working 4health.

I have been on remicaid, humira, cilia without much luck either no response or lost response in a month with horrible side effects or crohn's in joints jury is out on that but how did you know you had the lupus thing? I have now completed the starter dose of Stelara and knock on wood that I think is working. I also never heard of meningitis with it. Haven't found much out looking on Internet about side effects

 Reply posted for sj885.

I had my first infusion of Entyvio today and it went pretty smoothly.  The actual infusion only took about 30 minutes which is really fast compared with Remicade and so far I am not feeling any differently (no negative side effects).  I guess I will have to give it some time & see how it goes.  Hopefully it will help get this UC under control!!  :-)

I have had 2 infusion of Entyvio. I have what they call "steroid dependent" left sided UC. About a year a go I was hospitalized 2x in a week w random pain in my chest and head and i spiked a fever. After typical hospital chaos w multiple 'normal' test results they determined I had aseptic meningitis - I was on azathioprine & remicade to maintain remission of my UC.  In extremely rare cases this has occurred, in the few reported cases it occurred after 6 mos of treatment, I had been on it for just over 2 yrs. i had been complaining to my GI that I thought the remicade wasn't holding me through my 8 weeks & we were about to move to 6 weeks (previously upped my dosage of it and tested negative for antibodies). I also developed the medication induced lupus syndrome w the meningitis, it was awful (a year later & still not normal).  I've had to deal w constant fatigue, headaches & flares while I was awaiting this 'miracle' drug. B/c I was taking both the aza & remicade they couldn't assign blame to 1 drug & didn't want to risk me getting sick again so no more of either for me. 

the FDA approved Entyvio in May, its only being offered to patients who have failed on other treatments, this may be a reason why some have not been able to get approval. I went through nearly a year of failed treatments awaiting this drug. My GI did have to send letters and documentation to my insurance before they approved it. I also know that the drug wasn't being given to all medical centers, my GI has been quoted in some of the literature about it and his hospital didn't even get the drug. I'm going to an infusion center who claims that they were the first in the country to get it. My 1st infusion was 6/20 and my 3rd will be July 30th. 

Best wishes, Kate

I had bad reactions to Remicade, Humira, Prednisone and many oral/topical meds before those.

It looks like Cimzia (certolizumab) or Entyvio (vedolizumab) will be in my near future, but we are waiting for my antibodies to the prior drugs to come down first.  I developed drug-induced Lupus from Remicade, and then had bad antibodies against Humira after just 2 rounds.

Since I have UC not Crohn's, my Dr. had to write letters to the ins. co. about how the other meds were bad for me to get Cimzia approved for future use.    

I had not heard that insurance won't cover the new drug until 6 months after FDA approval.  The date of approval was May 20, 2014.  That's 4 months to go.  My ins. is pretty top-line through BC/BS, not an HMO; I wonder if that matters?  Has anyone obtained ins. approval for Entyvio?

I'm also worried about needing a blood test to detect antibodies against the drug.  Such tests have been around a while for Remicade, one came out last year for Humira (unbeknownst to many Drs. who prescribe it), and none are currently available - to my knowledge - for Cimzia.  I assume the same will be true for Entyvio.

Only a small % of patients develop drug-induced Lupus from these medications, but it can mess up your life if you're unlucky enough to get it.  I continued working long hours in a professional position while balancing my UC symptoms for 4 years, but the drug-induced Lupus forced me onto medical leave.

I would be optimistic about Entyvio if labs offered tests for serious side effects.  I might have had Lupus for years without knowing it.  I had pain that came and went and waves of exhaustion.  Learning about the Lupus was technically bad news, but at least it gave me hope that once the antibodies are gone I should feel better.

Any input would be appreciated.  Good luck to the pioneers who have started on the new med!

 Reply posted for elaine558.

We're kind of in the same boat.  6mp, Remicade then Humira.  They want to go with Entyvio and not try Cimzia because they feel Cimzia is so close to Humira.  But insurance says no.  They've already talked ostomy but I would rather him try a medicine and the surgery be the last resort.  He's had 2/3 of his colon removed already and did great for about a year.  He's just 18.

Good luck with Entyvio.  I'm optimistic for good results with it.  We've got to stay positive, but I know its hard after going through several drugs - we've been there for five years trying one thing after another.

 Reply posted for joy4.

I will also be starting Entyvio probably next week.. Since it is so new the infusion centers are having a hard time getting it. I am at the end of the line. All other drugs including a clinical trial of Stelara have either quit working or caused pancreaitis. If this doesn't work for me (and my doctor doesn't think it will) then I am facing total removal of my colon. Hope it works!

 Reply posted for kate2.

We are trying to get our son approved to take Entyvio (through insurance) and we're not having much luck.  We're going on the fourth week of trying.  It's not covered until Entyvio has been FDA approved for 6 months.  Has anyone else had trouble?

There's not a whole lot of info out there on Entyvio yet.  I hope both of you see great results.  Our son started out on 6mp then Remicade then Humira. (This has all been in 5 years).  Haven't tried Cimzia yet.  Doctors feel it is so much like Humira.

Glad your infusions went well.

 Reply posted for sj885.

Hi--I'm new to the  forum. Thanks for posting and good luck! I'll be looking forward to hearing how this goes for you. I've been on Remicade since 1/31/14. Even with increased dosage for dose numbers 4 and 5, it doesn't seem to be helping at all. I have an appt with my GI doc on Thursday, and he mentioned to me when we spoke by phone a couple of weeks ago, that he wants to discuss Entyvio, which had just been approved. I have a lot of questions, and some degree of apprehension, but something has to change, so I'll probably be willing to try this.

If fatigue turns out to be the only issue, count me in! (I get fatigued on Remicade, and I'm not getting any benefits.) Funny thing about the infusion only taking about 30 minutes is that the only positive thing that I've had in this 15 month or so flare is that the 2 - 3 hours in the infusion room have actually been kind of relaxing, and even enjoyable, in a weird way. (Great staff and very nice patients--not a bad way to spend a morning.)

Again, good luck to you and to others who start Entyvio!

 Reply posted for kate2.

That is nice that the infusion went so quickly.  Remicade always seems to take at least a couple hours.  Thank you for your reply.  :-)

 Reply posted for sj885.

Hi, had my first entyvio infusion yesterday.   The infusion lasted only 30 min, only side effect was fatigue yesterday.