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10-07-2017, 06:11 AM   #1381
ronroush7
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I hope the switch to monthly doses will be effective for you... there is good chances it will be as it worked the first year, so maybe it's a matter of finding the right dose now.

I didnt try stelara nor infliximab... i was on humira before. Stelara will be available in 6 months where i live, the plan may be to switch to it or infliximab if entyvio fail on me but I also risk surgery as I have strictures and had important bleeding from my TI...
Hoping the best for you.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-07-2017, 08:00 AM   #1382
Guerrero
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Thank you Ron. How things are going with you?
10-07-2017, 08:36 AM   #1383
ronroush7
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Thank you Ron. How things are going with you?
My stomach seems upset the last few days. I see the specialist Wednesday

10-08-2017, 03:10 PM   #1384
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Hope everything is Ok for Guerrero and ronroush7!
10-08-2017, 03:22 PM   #1385
ronroush7
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Thanks

10-16-2017, 09:31 AM   #1386
Guerrero
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My gut is growling a lot these last weeks, do you usually consider it as a symptom of something going wrong or not?

Also i'm trying to quit omeprazole but i'm having stomach issues again...

Not sure if it's crohn's related. For sure this Entyvio is a long journey before it really kicks in. I still hope it will work, but i'm starting to have some doubts...
10-16-2017, 09:45 AM   #1387
ronroush7
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I hope it works

10-16-2017, 10:41 PM   #1388
GI Jane
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Going for my next infusion on Wednesday....wish me luck they stick me 1st time....well I'd be happy with 3rd and not 12th.....sigh....
10-16-2017, 10:45 PM   #1389
ronroush7
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Going for my next infusion on Wednesday....wish me luck they stick me 1st time....well I'd be happy with 3rd and not 12th.....sigh....
Prayers and support.

10-17-2017, 05:34 AM   #1390
Guerrero
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Good luck jane. Hope you'll be fine
10-17-2017, 08:41 AM   #1391
DougUte
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Does anybody know if Entyvio can cause Kidney problems? My labs came back and show an elevated kidney enzymes. PCP thinks it is a result of my diabetes but I am finding it very interesting that it shows up within months of being put on Entyvio.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
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Nature Made Multivitamin
10-18-2017, 07:55 PM   #1392
GI Jane
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Ya Kidney and liver issues can happen. Mine go up some and then back down. Just had my 6 infusion I think.....soooooo tired and really itchy this time which found out is a side affect too.....but hey it's working not having to run to bathroom all of the time.
10-21-2017, 04:54 PM   #1393
lgpcarter
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For anyone who switched from every 8 weeks to every 4 - did you notice a difference right away? Like, it was just not lasting quite long enough but shortening the did the trick?

I've had infusions in Aug, Sept and Oct and I don't think things are getting any better.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
10-21-2017, 05:06 PM   #1394
ronroush7
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For anyone who switched from every 8 weeks to every 4 - did you notice a difference right away? Like, it was just not lasting quite long enough but shortening the did the trick?

I've had infusions in Aug, Sept and Oct and I don't think things are getting any better.
I think it takes a while.

10-21-2017, 07:27 PM   #1395
lgpcarter
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It does to kick in at first for sure, but have been on it for 2 years. Switched to every 4 weeks in September.
10-22-2017, 06:04 PM   #1396
Guerrero
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For anyone who switched from every 8 weeks to every 4 - did you notice a difference right away? Like, it was just not lasting quite long enough but shortening the did the trick?

I've had infusions in Aug, Sept and Oct and I don't think things are getting any better.
I'm afraid it may be slow in that case too, but I'm not sure as I have no direct experience of a switch with entyvio... when I switched to a weekly humira shot though, my doctor said it made sense to check if it worked 6 months later...

I hope someone can share experiences with entyvio.
10-25-2017, 03:31 PM   #1397
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Hi all. I'm 38 female. Diagnosed with Crohns in 2003 at the age of 23. I'm 38 now. Since then they removed 13 inches of intestine including my terminal ilieum. GB removed and gastroperesis at 30%. Perianal Crohns started in the mid 2000s. Dealt with it on my own until Humira sent me into remission. Came off of Humira due to infections i couldn't fight. A yr later fistulas are abundent.ive had 5 surgeries since April for abscess drainage. I have 2 setons placed and I'm in hell. I'm on entyvio but I feel so sick I don't know if it's working. I've taken Remicade, cimzia, humira, now this. My only other option is Stratera. So I have 3 open wounds that drain non stop. I need bowel rest and the Dr mentioned a colostomy. I've researched everything and if I can get my life back I'll do anything. Just wondering if anyone has perianal Crohns. People shy away from talking about it but I need someone that understands. Thanks all
10-25-2017, 07:33 PM   #1398
ronroush7
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Hi all. I'm 38 female. Diagnosed with Crohns in 2003 at the age of 23. I'm 38 now. Since then they removed 13 inches of intestine including my terminal ilieum. GB removed and gastroperesis at 30%. Perianal Crohns started in the mid 2000s. Dealt with it on my own until Humira sent me into remission. Came off of Humira due to infections i couldn't fight. A yr later fistulas are abundent.ive had 5 surgeries since April for abscess drainage. I have 2 setons placed and I'm in hell. I'm on entyvio but I feel so sick I don't know if it's working. I've taken Remicade, cimzia, humira, now this. My only other option is Stratera. So I have 3 open wounds that drain non stop. I need bowel rest and the Dr mentioned a colostomy. I've researched everything and if I can get my life back I'll do anything. Just wondering if anyone has perianal Crohns. People shy away from talking about it but I need someone that understands. Thanks all
You said you need bowel rest. Has your doctor talked about TPN?

10-25-2017, 09:06 PM   #1399
lgpcarter
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Hi all. I'm 38 female. Diagnosed with Crohns in 2003 at the age of 23. I'm 38 now. Since then they removed 13 inches of intestine including my terminal ilieum. GB removed and gastroperesis at 30%. Perianal Crohns started in the mid 2000s. Dealt with it on my own until Humira sent me into remission. Came off of Humira due to infections i couldn't fight. A yr later fistulas are abundent.ive had 5 surgeries since April for abscess drainage. I have 2 setons placed and I'm in hell. I'm on entyvio but I feel so sick I don't know if it's working. I've taken Remicade, cimzia, humira, now this. My only other option is Stratera. So I have 3 open wounds that drain non stop. I need bowel rest and the Dr mentioned a colostomy. I've researched everything and if I can get my life back I'll do anything. Just wondering if anyone has perianal Crohns. People shy away from talking about it but I need someone that understands. Thanks all
Our stories are fairly similar, though I quit Humira because it didn't work, and neither did Simponi. I've done Stelara, but not Cimzia (not available in Canada for Crohn's and my GI doesn't think it will be). Had many good years n Remicade, went off to get pregnant and then had a reaction and loss of response when I tried to go back on. I am 37, with Crohn's for 17 years.

Friggin' perianal disease is terrible. My GI just upped my Entyvio dose to monthly to try to get fistulas to heal. No evidence to suggest this is actually going to work, but can't hurt and not really any other options at this point. It doesn't seem to be working, fistulas are as angry as ever - 1 seems to be the biggest problem at the moment, but hard to tell exactly what is going on down there. Other bowel symptoms also seem to be ramping up as well, so getting close to time to move on from Enytvio and see if there are any trials happening that I can get in on. I am not quite ready to consider an ostomy yet, though I have no doubt one will be necessary someday.

That being said, I will consider it when I have run out of other options. When I did discuss it with my GI and then with the surgeon who did my resection last year, they indicated it would likely be a permanent one. I am fairly sure that there are people here who have had temporary ostomies to allow their fistulas to heal that they later had reversed. Check the Fistula subform on the Surgery thread to find them.

In terms of the Entyvio - it took 8 months before it took full effect for me. I was on prednisone while I waited for it to kick in. Are you on anything else along with the Entyvio? I am also taking Cipro and Flagyl, which help keep the perianal inflammation down and the fistulas open and draining.

I have no experience with TPN, so I can't comment on that.

All that to say you are definitely not alone in dealing with perianal disease and it really really sucks.
10-26-2017, 04:08 PM   #1400
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Hi. I'm new here. I have UC (pancolitis Dx 2008). I've been on most meds out there. All the 5-ASA's which caused exacerbation and then pancreatitis x2. Imuran then also caused pancreatitis for the third time. Tried Sulfasalazine and others that caused more issues. I then did three years of Remicade until I became suddenly severely sick after the last infusion I ended up doing because it turned out to be drug-induced lupus. Then did Humira for a year and a half until the docs (GI and Rheumy) determined it was also causing DIL.
I began Entyvio in July 2015. Everything was going really well and I was happy with the results. I was controlled with bowels and doing better than the Remicade or Humira ever did. My only complaint was the bad low back, hip and knee pain that was almost constant and fatigue for up to a week or so after infusions. My GI (UCSF) said it was because of the way the med is designed to go straight to the gut and the disease causes the joint pains and inflammation. I couldn't do the other med that many do with their Entyvio because of the issues Ive had with meds and drug induced pancreatitis.
I had my latest Entyvio infusion three weeks ago and suddenly have been struggling ever since. Extreme fatigue (more than the usual after infusion fatigue) and my muscles and joints have been weak and painful along with a few other symptoms. It truly gives me flashbacks of DIL. I talked to my doctor and he ordered labs to check the Entyvio blood count and for Entyvio antibodies. Has anyone else had this test done from Entyvio? I've done it for Remicade but not heard of this one. I talked to my GI nurse and she said I could only do the test at UCSF because other hospital in the area don't even offer or do it.
Waiting for results but just checking to see if others have developed Entyvio antibodies? Thanks
10-31-2017, 06:12 AM   #1401
Guerrero
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I didnt got checked with antibodies yet, but i guess in your case it could makes sense after two years.

For what i've understand it is quite random to build antibodies or not... some will build it after one year other after much longer or mabe never.

Hope you'll be fine soon
10-31-2017, 09:53 AM   #1402
Guerrero
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My belly has been growling a lot this last week. This night i woke up with slight pain and discomfort.
I'm afraid it comes from my strictures... hope entyvio wil start working much better after 5 months. Anyone has experiences to share of inflammatory strictures with entyvio?
I only experienced a lot of up and downs with it so far
10-31-2017, 09:54 AM   #1403
ronroush7
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Hope it works soon

11-02-2017, 08:33 PM   #1404
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It probably took around 2 weeks for my insurance to approve it.

I haven't really noticed a difference yet, but I'm getting another entyvio infusion this Friday.

I had one night of joint pain... Not bad just something I don't usually deal with.
It takes six to seven months to kick in!
11-02-2017, 09:02 PM   #1405
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Ya Kidney and liver issues can happen. Mine go up some and then back down. Just had my 6 infusion I think.....soooooo tired and really itchy this time which found out is a side affect too.....but hey it's working not having to run to bathroom all of the time.
That's really good to here!
11-04-2017, 08:39 PM   #1406
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Hi all. Iíve been on entyvio for close to two years, have been in remission for most of this year, tummy not very happy at the moment though, but I think thatís more to do with restrictions from past surgeries. Wondering if anyone has experienced any memory issues while on entyvio? I do also take pain meds daily as I also have lupus, so it could be from that. I have just noticed these last few months that my memory seems to be quite bad and itís starting to concern me.
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Diagnosed 1997.
3 x resections
Gall bladder removed
Beginnings of arthritis
Drug-Induced Lupus
Current meds : Imuran, Questran Lite, B12 Injections, Endep, Allipurinol, Entyvio, Nexium, Panadiene Extra, Targin, Plaquenil
Other alternative treatments : Oliveleaf extract.
11-04-2017, 10:30 PM   #1407
ronroush7
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Hi all. Iíve been on entyvio for close to two years, have been in remission for most of this year, tummy not very happy at the moment though, but I think thatís more to do with restrictions from past surgeries. Wondering if anyone has experienced any memory issues while on entyvio? I do also take pain meds daily as I also have lupus, so it could be from that. I have just noticed these last few months that my memory seems to be quite bad and itís starting to concern me.
I hope it gets better soon.

Last edited by ronroush7; 11-04-2017 at 10:46 PM.
11-04-2017, 11:59 PM   #1408
DougUte
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I don't think I have memory problems from Entyvio. I have been on it since last February and am experiencing remission from Crohn's. I am having more memory issues as I get older, but that started before Entyvio.
11-09-2017, 10:34 AM   #1409
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Hi all. Iíve been on entyvio for close to two years, have been in remission for most of this year, tummy not very happy at the moment though, but I think thatís more to do with restrictions from past surgeries. Wondering if anyone has experienced any memory issues while on entyvio? I do also take pain meds daily as I also have lupus, so it could be from that. I have just noticed these last few months that my memory seems to be quite bad and itís starting to concern me.
"So it took a year for the entyvio to kick in?
11-13-2017, 09:16 AM   #1410
Guerrero
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From the comments seems it takes 6-7 months, but it may be case by case
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