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Update and ENTYVIO (Vedolizumab)

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Ulcerative Colitis
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Posted 10/8/2014 7:03 AM (GMT 0)
Haven't posted here in a while. Back story: I was originally diagnosed with UC in 3/2013 after colonoscopy. Next day, tests found that I had C-Diff. Felt perfect for several months when taking Vanco/Dificid, but those didn't kill it. Finally killed the C-Diff via FMT in 12/2013, symptoms didn't go away. Re-diagnosed with UC.

I don't really have flares per-se that a lot of people experience, I've simply felt horrible for the past 13 months straight. 15-20 bowel movements per day; the urgency is really the worst part though.

Have tried and failed:
-Lialda and Asacol (allergic/intolerant- immediately vomit)
-Azathioprine (threw off liver counts right away)
-Uceris (zero effect)
-Humira (zero effect)
-Remicade (10 weeks in, zero effect)

According to my GI, only options remaining are Vedolizumab or surgery. Wants me to schedule consultation with surgeons. I am 20 years old and not ready to go the surgery route until I've exhausted every possible option so of course I am going to try the Vedolizumab.

I still think it's possible that I've been mis-diagnosed, and am debating going to get a second opinion; I find it odd that I always felt perfectly fine when taking C-diff medicine, even though I supposedly had UC as well at that time. I took an 8 day roadtrip to Maryland (from the midwest) while on Vanco, and since being off of it I can't even leave the house.

I also find it weird that none of the UC treatments have had ANY effect on me. It seems that most people who fail the treatments usually have at least SOME improvement, at least initially. My GI even admitted that I am pretty much his only patient who hasn't had ANY reaction to any of the standard treatments. Uceris, Humira and Remicade have all yielded literally zero results. No change whatsoever. Prednisone is the only thing that has ever made a difference.

Anyway... just trying to get people's thoughts. Have any of you personally had success with Entyvio/Vedolizumab after failing Humira or Remicade? Thanks!

Post Edited (Hayden) : 10/8/2014 1:08:21 AM (GMT-6)

Posted 10/8/2014 10:31 AM (GMT 0)
Sounds like my story, except for the c-diff and the flare I am currently in started in 2010.

I've been through them all too (drugs) and steroids only have a limited effect on me and only in high doses.

I was in a study for Vedolizumab, either I was on placebo or it was just as good as Remicade and did nothing for me. That's when I started Humira which really didn't help. Nothing has put me into remission.

Maybe your doctor doesn't know about Simponi? It's worked well for those who've failed to get results from other biologics. I started that last week with steroids from previous weeks and I am seeing improvement!
Posted 10/8/2014 3:37 PM (GMT 0)
Are you absolutely sure that the C-Diff is gone? It is a very nasty and elusive bug that is extremely hard to eliminate. Many times tests for it generate false negatives, especially if you have been on antibiotics recently. Often times you need three different tests on three different samples to make sure it is truly gone.
Posted 10/8/2014 5:45 PM (GMT 0)
xeekk, for some reason my doctor has never mentioned Simponi. Although I have done some reading about it. I will need that to go if this Vedolizumab does not work. I sort of forgot that was an option. Thanks for mentioning!

garylouisville said...
Are you absolutely sure that the C-Diff is gone? It is a very nasty and elusive bug that is extremely hard to eliminate. Many times tests for it generate false negatives, especially if you have been on antibiotics recently. Often times you need three different tests on three different samples to make sure it is truly gone.


Yes, 100%; unless it morphed into some variant of C-diff that goes undetected by all stool tests. Trust me, when they said it was gone after the FMT I did not believe them at all. I tested quite a few times over the next two months following the FMT. I even did another one just a couple of months ago. Every single test came back negative.

I did not believe that it was gone after the FMT as I literally felt no change in the following days; still felt awful. I was expecting to feel great after the FMT (normal) since I did while taking C-Diff medicine.
Posted 10/8/2014 6:40 PM (GMT 0)
Have you tried Predisione? If you might be going for surgery then it may not be the best option but I didn't see it listed on your "Failed list". Pred use can make surgery a little more difficult.

I'm currently battling C.diff myself, Vanco helped but it came right back and worse after I was done with the Vanco. I might also have pouchitis too (since I have a j-pouch); I just started Flagyl yesterday and my symptoms improved overnight dramatically. I was hoping that they'd write me a script for Dificid but the GI wanted to try Flagyl first.

Remicade finally failed for me after it worked great for 4 years, then Humira never worked for me and Simponi didn't do much either.

I had surgery last year I just feel so much better now that my "Diseased" colon was removed, I woke up from surgery and I felt so much better with it being out of my body. My GI said it was like the monster was removed from my body.

If you are opposed to surgery then you can try Cyclosporine; it works really quickly. It's usually used to 'save the colon" or to get the patient strong enough for surgery.
Posted 10/8/2014 9:05 PM (GMT 0)
Sorry to hear about your C-Diff and I like what you said about the "monster being removed".

Yes, I did take Prednisone about a year ago, last winter. 8 week 40mg taper and it worked great when I was above 15-20mg. I asked my doctor to prescribe it yesterday so I can get out of the house for a bit, but he said Remicade + Prednisone is not a good idea as the risk for infection would be heightened too much.

On top of what I've mentioned before, another odd thing is that I never have [visible] bleeding, nor do I have pain; I do get some cramping on rare occasion but that is certainly an exception. The only symptoms I experience are high frequency, loose stools (always), and urgency. I have never had to be admitted to the hospital or anything like that, it has just been a consistent disease thus far that has destroyed any quality of life basically.

This is why I'm resistant to surgery:

1) It's not life threatening or anything at this point. Quality of life sucks; yes, but I'm not bleeding out, needing to be hospitalized, etc... I'm only 20 years old and don't want to have a stoma or go through that experience unless there is nothing else left to try. I've heard the horror stories of people having issues even after surgery and wishing they never had it done. Theoretically I still have 75% of my life left (hopefully, God willing) so I don't want to jeopardize my future with a short-sighted impulse decision. At the same time I'm not willing to let more years pass by like the past 2 have.

2) Most UC people seems to have a larger set of symptoms, and also seem to at least have SOME reaction to the treatments. I still think I may have somehow been mis-diagnosed. Maybe I am in denial. But my next step if the Entyvio (and possibly Simponi) fails would be to get another opinion, possibly do a review of my case at Mayo.
Posted 10/9/2014 12:19 AM (GMT 0)
started entyvio...after failing remicaide and simponi.  Progress is slow but hopeful.  Many small areas of improvement.. on 4eth week.... at least not in bathroom every 30 minutes.  Bleeding cut by 95%... accident... well at no every day 3 x per day.  Now just maybe 1 time in 3-4 days.
Posted 10/9/2014 2:06 AM (GMT 0)
Hayden:

1. Have they done recent scopes (colonoscopy, flexible-sigmoidoscopy) to 100% guarantee that they see disease right now? I'm assuming they have, just checking... because those symptoms sound like IBS as well. But, if your doctor is telling you to look at surgery or Entyvio then I'm assuming there are indications that what you have is UC.

2. Is it fair to say that when you are on antibiotics you do a lot better? If so, you could always look briefly into the triple antibiotic therapy. I know one former member did it and considered himself cured. Likely he had something different than most of us, but could be the same for you, too.

3. Have you heard of methotrexate (immune lowering drug)? I believe it can be used for UC, though I have never done so.

I'm sorry you don't feel well. :( We're all here for you though.
Posted 10/9/2014 3:05 AM (GMT 0)
My daughters story isn't one you want at the moment, but I can offer a few thoughts.
Is your inflammation throughout your colon?
A second opinion is a good thing. Bring all you scopes and labs. Are they looking ok? I'd vote for Entyvio, and I'd try to get this inflammation under control soon. You are not living much of a life at those kind of numbers for BM's. No need to define it as life threatening to act.You need to respond before the simmering inflammation does even more damage. Pred isn't the answer.
Surgery
isn't to be taken lightly, and you need to know you have done what you needed to get there mentally. It can also be the right answer at the right time.
Posted 10/9/2014 6:17 AM (GMT 0)
I really appreciate all of the input, thanks!

I had a colonoscopy earlier this year. April maybe? I think I've had 3 total over the last 11 months or so, including the FMT. I haven't really taken an antibiotic since the C-diff was cured... I could certainly give it a shot. I think all of our cases are different so I will never rule something out if it worked for someone else. I have fantastic insurance as well (knock on wood), so luckily I'm able to explore all of my options without any financial burden.

@Katmom, yes I believe it's the entire colon that's inflamed. And I understand that I'll need to act even though it's not life threatening; I just mean that I'm not going to immediately jump down the surgery route without trying everything else first.

Post Edited (Hayden) : 10/9/2014 12:20:05 AM (GMT-6)

Posted 10/9/2014 1:02 PM (GMT 0)
Hayden, well I would guess that you certainly have UC then if you've been scoped three times in the last year.

I was just tossing up the antibiotic idea IF it seemed like your symptoms were much better when they used them for C-Diff. If there isn't a link to feeling better with them then I'd proceed with caution since you seem to have so much disease activity right now. I'm always one that has hope for a treatment to work, but sometimes the people that progress right to the big drugs and surgery save themselves some hassle. It's just a judgement call... but I wanted to give you that info just in case.

Have you had a second opinion?
Posted 10/9/2014 4:57 PM (GMT 0)

Hayden said...

This is why I'm resistant to surgery:

I'm only 20 years old and don't want to have a stoma or go through that experience unless there is nothing else left to try. I've heard the horror stories of people having issues even after surgery and wishing they never had it done.

Hayden,

Don't believe everything you read on the Internet, there are some vocal people who have had problems but the majority of people who have surgery have had very good outcomes and go on to live normal lives and don't have time to post on the Internet. There are a few factors that go into this; 1st you want a very experienced surgeon build the j-pouch and 2nd if you are pretty certain that you have UC and not CD then you have very good odds of having a good functioning j-pouch.

The surgeon that I used said that his patients have about 97% of their j-pouchs and the other 3% were misdiagnosed with UC when they actually had crohns (they'd likely end up with an ostomy at some point anyways).

Living with an Ostomy wasn't as bad as people make it out to be, I was actually thankful for my ostomy because I felt so much better. Depending on how many surgeries that you would need then it could be as little as 3 months with an ostomy.

I'd argue that it's best to get the surgery when you are young because it is easier to recover from and even safer; you could go on and live a very productive life without UC. The CCFA has stats that say about 25% of UC patients will need surgery at some point in our life-times.

Like Thoreau mentioned you could use Mexotrexate as a maintenance drug but you may need something like Cyclosporine to get your UC under control. I had to use Cyclosporine twice to get my UC into remission. I chose not to use it a 3rd time and finally had surgery which was a great decision for me and I only wish that I had chosen surgery years earlier.
Posted 10/9/2014 10:07 PM (GMT 0)

Thoreau said...
Hayden, well I would guess that you certainly have UC then if you've been scoped three times in the last year.

I was just tossing up the antibiotic idea IF it seemed like your symptoms were much better when they used them for C-Diff. If there isn't a link to feeling better with them then I'd proceed with caution since you seem to have so much disease activity right now.

Have you had a second opinion?


Well UC is what they diagnose when they can't find anything else that's causing the colitis, correct? When I was taking antibiotics for C-Diff, I did feel perfect almost immediately. No symptoms. We (doc and I) fully expected that once the C-diff was gone I would be back to my normal self.

Basically, the C-Diff was the beginning of any health issues I had. It's not like I had immune-caused ulcerative colitis first and then just caught a random case of C-Diff. I started feeling badly in December, went to the doc in February or March after it got progressively worse, and then was told I had colitis, which they found out later that week was caused by C-diff bacteria.

And I am looking into a second opinion currently.
Posted 10/17/2014 1:28 AM (GMT 0)
It only took insurance 2-3 days to approve the Entyvio so I'll be starting that next week. Hoping for the best.
Posted 10/17/2014 1:44 AM (GMT 0)

Hayden said...

Well UC is what they diagnose when they can't find anything else that's causing the colitis, correct?.

Actually, no, that's incorrect. To be diagnosed with uc your biopsies have to come back indicating uc. If you have colitis and they don't know why then it's just called colitis, cause unknown. You can go ahead and Google exactly what they look for in the biopsy, but no, they don't just say, huh, still has colitis, must be UC
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