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


 
11-14-2017, 02:45 AM   #1411
DougUte
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I think Entyvio got me back in remission in short order. About 3 months.
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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
Vitamin D3 10000 I.U.
Nature Made Multivitamin
11-14-2017, 05:42 PM   #1412
GI Jane
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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
Wow my twin I found you finally....yep DIL here too from Remicade. The only reason I'm not tired all of the time is because Tramadol gives me energy. I take it for pain only slightly takes the edge off but some days that's enough to keep going.

My hips have been hurting lately and shoulder but have had some debridement of deposits there which they could only take out half because of the extreme pain. I've also had headaches everyday since my last infusion....sigh....and runs back but one bad foot choice and back to that toilet....man I need to get the bidet! The VA talked about doing that test in December when I have to go in for my yearly spinal exam. Take care...one day at a time here....working on Ancestry again and photo books with my kids and grand daughters to keep me distracted. If I don't keep distracted all day it's a spiral which is hard to come out of so one day at a time and hey how are your photo albums :-)
11-28-2017, 05:42 PM   #1413
stevepokal
 
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hey everyone, first time posting on this or any forum of the sort.

ive had crohns diagnosed for 10 years now and have been on remicade for the past 8 until some insurance problems caused me to miss a dose and i developed antibodies. I had been on humira before but i did not respond so i am trying entyvio. i had my third infusion about 2 weeks ago and i am still not seeing any results. I am being patient as i have been reading and seeing on here that it can take up to 6 months to start really kicking in.

i have never had any side effects from remicade besides fatigue on the day of the infusion but i feel like i am getting a lot of side effects from the entyvio. first, day of the infusion i am completely wiped out, like passing out as soon as i get home tired. for a couple days after the infusion my whole body aches and my muscles are sore. the fatigue has been going away after about a week or so but the stiffness in my hands and pain in my feet has been persisting and not going away. it is manageable compared to my crohns but this and my crohns makes for some pretty frustrating times.

i had my first visit to the hospital about a month ago which was so frustrating because it was basically a waste of time. they gave me morphine which didnt help my pain at all and then just sent me home because i didnt have a complete blockage and was finally able to pass some stool.

i remember when i was first getting sick and how much of a toll it took on me and i just really hope the entyvio can start working soon. its been about 6 months now for me with active crohns that is generally more painful than before remicade started to work for me.

how do you guys handle work and your other responsibilities during flare ups? i am managing but not well. do any painkillers work for anyone? im scared to ask my doctor for painkillers because i dont want to take narcotics and thats pretty much all there is.
12-01-2017, 01:19 AM   #1414
GI Jane
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hey everyone, first time posting on this or any forum of the sort.

ive had crohns diagnosed for 10 years now and have been on remicade for the past 8 until some insurance problems caused me to miss a dose and i developed antibodies. I had been on humira before but i did not respond so i am trying entyvio. i had my third infusion about 2 weeks ago and i am still not seeing any results. I am being patient as i have been reading and seeing on here that it can take up to 6 months to start really kicking in.

i have never had any side effects from remicade besides fatigue on the day of the infusion but i feel like i am getting a lot of side effects from the entyvio. first, day of the infusion i am completely wiped out, like passing out as soon as i get home tired. for a couple days after the infusion my whole body aches and my muscles are sore. the fatigue has been going away after about a week or so but the stiffness in my hands and pain in my feet has been persisting and not going away. it is manageable compared to my crohns but this and my crohns makes for some pretty frustrating times.

i had my first visit to the hospital about a month ago which was so frustrating because it was basically a waste of time. they gave me morphine which didnt help my pain at all and then just sent me home because i didnt have a complete blockage and was finally able to pass some stool.

i remember when i was first getting sick and how much of a toll it took on me and i just really hope the entyvio can start working soon. its been about 6 months now for me with active crohns that is generally more painful than before remicade started to work for me.

how do you guys handle work and your other responsibilities during flare ups? i am managing but not well. do any painkillers work for anyone? im scared to ask my doctor for painkillers because i dont want to take narcotics and thats pretty much all there is.
Doctor told me he may need to ad another medication along with the entivio cannot remember the name.

Heat really helps me with the pain. I use a heating pad ALOT and hot baths with epson salt and baking soda or hot showers...really hot. Also, icy hot helps too some...stinks out all around me but works a bit....tired will try to think of more later...closing windows.
12-06-2017, 01:02 PM   #1415
Roecoll
 
Join Date: Dec 2017
Location: Suffield, Connecticut

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Iíve been on Entyvio for almost a year, Iíve recently been getting sores in my nose and the corner of my lip (left side) takes forever to heal. I have UC so I donít know if itís the disease or medication. Iím thinking itís the Entyvio, anyone else????
12-06-2017, 01:06 PM   #1416
GI Jane
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I have constant redness on the corners of my mouth. I use nystatin when bad on the corners and pure coconut oil inbetween. I've actually been using the pure organic coconut oil on my face to help with dryness it's been better than any other cream I've ever used. My sister turned me on to using it. No zits from it either. I also get bumps in my mouth from Crohn's but they always say nothing can be done about that one.
12-06-2017, 01:37 PM   #1417
Guerrero
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Hi guys, I have good news from my last MRE, inflammation have almost disapeared in my ileum. Fibrotic strictures are still there, but I guess biologics can't do anything with it. Also my blood exams are good, hemoglobin is high and iron level is ok.

I guess I can say that after almost 6 months, entyvio is working!!!
12-06-2017, 02:16 PM   #1418
GI Jane
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Hi guys, I have good news from my last MRE, inflammation have almost disapeared in my ileum. Fibrotic strictures are still there, but I guess biologics can't do anything with it. Also my blood exams are good, hemoglobin is high and iron level is ok.

I guess I can say that after almost 6 months, entyvio is working!!!
Yea! That is awesome!!
12-06-2017, 02:32 PM   #1419
ronroush7
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Hi guys, I have good news from my last MRE, inflammation have almost disapeared in my ileum. Fibrotic strictures are still there, but I guess biologics can't do anything with it. Also my blood exams are good, hemoglobin is high and iron level is ok.

I guess I can say that after almost 6 months, entyvio is working!!!
That is great.
12-06-2017, 07:02 PM   #1420
DougUte
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Hi guys, I have good news from my last MRE, inflammation have almost disapeared in my ileum. Fibrotic strictures are still there, but I guess biologics can't do anything with it. Also my blood exams are good, hemoglobin is high and iron level is ok.

I guess I can say that after almost 6 months, entyvio is working!!!
Awesome!
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