Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Entyvio (Vedolizumab) Support Group


 
09-05-2018, 09:34 PM   #1471
GI Jane
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Guys I went from 1 entyvio injection every 4 weeks to every 8 weeks and now after 4 months my calprotectin is back up 1000ish (from 50-100 range)... my docs now plan to bring me back to every 4.. I hope it will work again and i'm not just loosing response to entyvio (been only 14 months i'm on it)...

Anyone had similar experiences?
You went from 8 weeks to 4 month intervals? I'm just curious. I'm doing well right now with the every 8 weeks and markers are good. Hoping to stretch it out more, or do they? I'm such a hard stick it gets old. I've actually been so much better with rice and beans in a tortilla shell and goat milk keifer and granola or oatmeal. It's the first time in forever that I've had a normal BM. I went camping alone and only brought a little food. Yep had my luggable loo in just outside my tent, thank God since the first two nights were bad. Then amazing on the third night wow. I'm optimistic and wanting to be in remission again, I was for 4 years once. I wish you luck. Sorry rambling...been away from computer and now feel the need to ramble lol.
09-06-2018, 02:16 AM   #1472
Guerrero
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Sounds good.
09-06-2018, 12:03 PM   #1473
Guerrero
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By the way i went from every 4 weeks to every 8 weeks, not every 4months... and my calprotectin went up... wondering now it it's because i need it every 4 weeks or i stopped responding to entyvio..
09-06-2018, 07:33 PM   #1474
lgpcarter
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By the way i went from every 4 weeks to every 8 weeks, not every 4months... and my calprotectin went up... wondering now it it's because i need it every 4 weeks or i stopped responding to entyvio..
hopefully going back to every 4 weeks will do the trick! Have you switched back yet?
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Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Humira 2 shots weekly, Entyvio every 4 weeks, Vitamin D 2000 IU

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran, Cipro and Flagyl
09-07-2018, 06:31 PM   #1475
Guerrero
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hopefully going back to every 4 weeks will do the trick! Have you switched back yet?
Yeah i hope so. I did the last one last week, and next one will be in 3 weeks instead of 7.
09-16-2018, 11:46 PM   #1476
GI Jane
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This last infusion I had joint pain so bad for a couple days. Just when I was about to call the doctor it calmed down. I was afraid I was becoming allergic like I did with Remicade. The normal headache but better now. This med still scares me for some reason even though it is working....why do all our meds have so many bad side effects...sigh
09-17-2018, 06:44 AM   #1477
DougUte
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This last infusion I had joint pain so bad for a couple days. Just when I was about to call the doctor it calmed down. I was afraid I was becoming allergic like I did with Remicade. The normal headache but better now. This med still scares me for some reason even though it is working....why do all our meds have so many bad side effects...sigh
Hi Jane!

So sorry about your side effects. That stinks. I wonder why some of us have to suffer those side effects. My only issue with Entyvio is fatigue after the Infusion.
09-17-2018, 06:33 PM   #1478
Maya142
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Thought this may be of interest to people on Entyvio...if you develop joint pain, including spinal pain, it would be worth seeing a rheumatologist as soon as possible. Typical symptoms of SpA would be morning stiffness, back pain that gets worse with rest and better with movement, red/warm/swollen joints, lower back/butt pain (usually comes from the SI joints or lumbar spine), hip pain etc.

My daughter was already diagnosed with SpA before she started Entyvio. Her SpA did flare after she started Entyvio, but at the time, we didn't have enough evidence to say if the two were connected, although we suspected it. She was taken off Entyvio within a couple months and went to Cimzia.

Emergence of severe spondyloarthropathy-related entheseal pathology following successful vedolizumab therapy for inflammatory bowel disease

Abstract
Objectives
Vedolizumab (VDZ) blocks α4β7 integrin and is licenced for the treatment of IBD. It has been associated with mild SpA-related features, including sacroiliitis and synovitis. Herein we report a series of cases demonstrating the emergence of severe SpA-associated enthesitis/osteitis following successful IBD therapy with VDZ.

Methods
We evaluated 11 VDZ-treated patients with IBD across seven centres who developed severe active SpA and/or enthesopathy, with the aim of characterizing the VDZ-associated SpA or entheseal flares. Imaging features demonstrating particularly severe disease were recorded.

Results
De novo SpA developed in 9 of 11 patients and flare of known SpA in 2 patients, with 4 patients requiring hospitalization due to disease severity. Available data showed that one of seven cases were HLA-B27 positive. The median time from VDZ initiation to flare was 12 weeks, with IBD well controlled in 7 of 10 patients (no data for 1 patient) at flare. Severe SpA enthesitis/osteitis was evident on MRI or US, including acute sacroiliitis (n = 5), extensive vertebral osteitis (n = 1), peri-facetal oedema (n = 1) and isolated peripheral enthesitis (n = 3). Due to arthritis severity, VDZ was discontinued in 9 of 11 patients and a change in therapy, including alternative anti-TNF, was initiated.

Conclusion
Severe SpA, predominantly HLA-B27 negative, with osteitis/enthesitis may occur under successful VDZ treatment for IBD, including in subjects with prior anti-TNF therapy for intestinal disease.
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09-27-2018, 06:53 PM   #1479
evginmb
 
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Trying to reach the person MAYA142 who posted about joint pain and SpA related to entyvio. I read your post with quote on this subject, but without sourcing for the quote (website, study, etc.). Can you post for reference please
10-10-2018, 04:40 PM   #1480
Guerrero
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I'm having abdominal cramps and pain since yesterday with no diarhea so far but gas.. such annoying. Thought my diet was ok with low fiber food etc... it happent after i had a simple tuna steak for lunch. Hope it's just a moment. Had to take antibiotics last week for an infection, maybe it's related too. I'm increasing probiotics
10-14-2018, 09:13 PM   #1481
lgpcarter
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Trying to reach the person MAYA142 who posted about joint pain and SpA related to entyvio. I read your post with quote on this subject, but without sourcing for the quote (website, study, etc.). Can you post for reference please
Not Maya, but here is a link: https://www.ncbi.nlm.nih.gov/pubmed/30204909
10-15-2018, 03:40 AM   #1482
Jonny84
 
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Hi folks,

Looking for some advice/stories of experiences of being on Entyvio.

I was on infliximab for 3 years and while it worked well for my bowels, I got a lot of unpleasant side effects. I was tired all the time, did not sleep well, got a fungal nail infection in my toe and my tongue was constantly covered in bacteria. It also affected my vision. In short i struggled to work and enjoy life as I was so knackered all the time so I asked to be taken off it.

My last infusion was in April and I've not been on any medication since . My medical team have now suggested I try Entyvio. I am open to being on a new medication but I am concerned that if I go on anther biologic, I'll end up feeling like I did on infliximab and I'll be back to square one!

Any help/advice you can give would be very much appreciated!
10-15-2018, 09:07 AM   #1483
Guerrero
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Entyvio should be much less systemic compare to infliximab as it only prevent some white blood cell to be activated inside the bowel, while anti tnf such as infliximab modify the inflammation mechanism in all the body.
10-15-2018, 11:06 AM   #1484
Jonny84
 
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Entyvio should be much less systemic compare to infliximab as it only prevent some white blood cell to be activated inside the bowel, while anti tnf such as infliximab modify the inflammation mechanism in all the body.
Yes, my doctor explained that it is gut specific which means it potentially has less side effects. It also means I wouldn't have to worry about going out in the sun anymore.

I'm just worried I might end up back at square one - feeling tired and run down because of the medication and in that case its not worth trying as I am swapping one set of problems for another. I'm on nothing just now and doing ok, not great but at least I can get out my bed in the morning and get to work...

Are there lots of people out there that this has been successful with this drug? There forums are great but I sometimes think they give a skewed perception of reality as people who are unwell or experiencing side effects are more likely to post. I'm finding it difficult to gain a proper understand of the effectiveness of this medication.
10-17-2018, 11:12 AM   #1485
Guerrero
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Yes you right, when you are well maybe you dont spend much time on a crohn's forum. However a lot of people here reported success on entyvio, while official data from studies show it's very effective (clinical remission) for like 50% of the patients.
You can find data here:
https://www.takeda.com/newsroom/news...data-analysis/

Considering your story and your doctor recommendation to try it, I think entyvio could be indeed a very good option for you.
10-18-2018, 01:56 PM   #1486
Grandma McB
 
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Johnny84 I have been on Entyvio for 3 years now and it has really helped me. Thankfully the only side effect for me is being tired day of infusion and day after. I am also on Imuran 400 mg a day. I have been on their co-pay assist program. December 1st I will be on Medicare plus a supplemental insurance policy. I am worried about what I will have to pay out of pocket for this medicine as the co-pay program will no longer be available to me with Medicare.

I am very glad that I gave Entyvio a try. Good luck to you if you decide to go with Entyvio!
10-18-2018, 09:58 PM   #1487
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Medicare will pay 80% but that will leave about $1200 each infusion for your secondary insurance company. My company pays the $1200 leaving me with a zero bill. Without insurance the bill could be $8000 per infusion! Ceck the drug coverage from your seconday and search around for another company if they do not cover the 20%
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11-02-2018, 11:19 PM   #1488
GI Jane
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Medicare will pay 80% but that will leave about $1200 each infusion for your secondary insurance company. My company pays the $1200 leaving me with a zero bill. Without insurance the bill could be $8000 per infusion! Ceck the drug coverage from your seconday and search around for another company if they do not cover the 20%
My quote it people with Crohn's never fart....way to dangerous lol.
11-26-2018, 04:33 PM   #1489
Octobergirl
 
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Johnny84 I have been on Entyvio for 3 years now and it has really helped me. Thankfully the only side effect for me is being tired day of infusion and day after. I am also on Imuran 400 mg a day. I have been on their co-pay assist program. December 1st I will be on Medicare plus a supplemental insurance policy. I am worried about what I will have to pay out of pocket for this medicine as the co-pay program will no longer be available to me with Medicare.

I am very glad that I gave Entyvio a try. Good luck to you if you decide to go with Entyvio!
Hi Grandma McB,

If you don't mind my asking, are you on Imuran with Enytvio only to prevent antibodies from forming or to help extraintestinal manifestations. I was on 150 mg/day but my arthritis and iritis flared, and my rheumatologist didn't feel comfortable putting me on more than 200 mg/day, so we are trying methotrexate. I'm wondering if I was able to go up higher than 200 mg/day if it would help my other symptoms.
11-26-2018, 07:28 PM   #1490
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I was on Entyvio and 50mg/day 6MP [like Imuran]. When they tried to go to 100mg of 6MP my white blood count dropped dangerously low and I went to 25mg/day. The 25 and 50mg per day of 6MP was causing squamous cell skin cancers. After the 7th cancer I decided to drop the 6MP. No more cancers and no ill effects.
I know of another person who was on Imuran and had her liver numbers go through the roof


Good luck
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