Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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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.
 
pjmel said:
Hi all. I’ve 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 that’s 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 it’s starting to concern me.
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"So it took a year for the entyvio to kick in?
 
trayK said:
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
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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 :)
 
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.
 
stevepokal said:
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.
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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.
 
I’ve been on Entyvio for almost a year, I’ve recently been getting sores in my nose and the corner of my lip (left side) takes forever to heal. I have UC so I don’t know if it’s the disease or medication. I’m thinking it’s the Entyvio, anyone else????
 
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.
 
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!!! :D :D :D
 
Guerrero said:
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!!! :D :D :D
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Yea! That is awesome!!
 
Guerrero said:
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!!! :D :D :D
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That is great.
 
Guerrero said:
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!!! :D :D :D
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Awesome!
 
I am waiting for a prior authorization from my insurance for Entyvio. I have an infusion scheduled for Thursday which might have to be rescheduled because the prior authorization has not been approved. I hate this part of the health care business.
 
I am currently on Entyvio and called them today to see if I needed to give them my new health policy ID number which they do not need. They advised me that they are changing our Co-Pay Assistance program to a calendar year. We need to go to their site entyvio.com and then click on the right side in a purple box that says "Sign up for Entyvio Connect" Then answer their questions and click submit. I did that and the only thing weird is when they give you a list of medications that you have been on in the past you have to click previously on each one they list even though you have not been on it. If you have any problems or need assistance they said to call them and they will help you through it. Everyone needs to do this no matter when your previously approved date is.
 
I have been on entyvio for 7 months now, and my calprotectin declined to 50. I never had a level so low, that's great.
 
A couple of years ago my insurance changed and I had problems getting the Entyvio set up again to the point where I had to start all over again. Hope that doesn't happen to you.
 
ronroush7 said:
I am a week overdue on my infusion. My insurance has changed companies and the nurses aren't resoonding . This morning my stomach was really bloated
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I've a lot of bloating too! But i try not to worry as all my last exams and endoscopy were fine.

I'm not in the us so i've no idea how it works with insurances. I hope you'll be fine
 
How long did it take to help when you started Entyvio? I just had my 2nd dose and don't notice anything better yet.
 
Mine kicked in after about the 3rd month. I can tell when I'm near my 8 week mark because I can't cheat at all eating that last couple weeks without suffering the consequences.
 
Well last checkup doc said all blood work was amazing and everything is good. I had small fistula that was gone on x-rays. Wondering is this med really for life or can I go off in the future. Went off my pain meds and realized I have more IBS than I thought and really have to watch what I eat. Oh well such is life.
 
Hi Everyone,

I need some Entyvio advice.

As a way of background: I got diagnosed with Crohns Colitis about 6 months ago. Am on prednisone (started out at 40mgs per day now down to 20mgs per day). My inflammation is completely controlled on the prednisone so I don't really have any crohns symptoms now. I actually have constipation and end up needing to use Miralax regularly. But I've been feeling virtigo and lightheadedness all day long ever since I started the prednisone and have been having a lot of trouble sleeping so I can't wait to get off it.

The plan was to wean off the prednisone and transition to just using Entyvio. I had my first infusion of Entyvio a couple of weeks ago. I didn't really feel any different afterwards and didn't notice anything out of the ordinary (other than it took 5 attempts to get the IV going and 2 hours to get the medicine transfused in my tiny veins, but that's besides the point). I caught a cold that was going around the office about a week later. Came in for my second infusion at week 2. Didn't have a fever, just a residual cough, got the infusion, nothing weird happened. Then the next day I noticed my skin was itchy and I have hives in all the places were my clothes rub up against me, like my neck, around my bra and on my hips and my back. The hives continued to get a bit worse throughout the day. Doctor increased the prednisone dose for a couple of days and the hives cleared up and went away within two/three days.

Has anyone else gotten hives from this medicine? Itching? The doctor wants to switch me to a different biologic now, but I really want to give this medicine another try. It seems like it wasn't that bad of a reaction and it was probably just because it was so much medicine so close together in the induction phase and my body isn't used to it? I was thinking I could just use some benadryl next time beforehand and after and see how it goes. Has anyone done that? My understanding is that Entyvio is the most specific to the gut and has the least side effects. All the other medicines i'm reading about also have hives as a possible side effect as well as worse stuff and they are a more overall body approach? And you have to be on two different medicines to prevent your body from getting used to the other meds right? Any advice would be so much appreciated :-/. I need something I can continue taking when I plan to get pregnant in the next year or two also, so that complicates everything.

Also I still have a residual cough that starts up in the evenings for some reason and then I can't stop coughing with every breath for like a few hours but then am always fine in the morning/afternoon. I don't know if that's just residual cold, or some allergic reaction leftover, or a combination of the two. I thought I would mention it in case anyone has had a similar experience.

Thank you to all who reply and sorry for the long post.
 
Hi LilMiss

I've been on Entyvio for 3 years this May. It has been the only medication that has put my UC into remission. But I almost had to stop it because of hives.

After my fourth infusion, I broke out in severe hives a few days afterwards. They were even in my mouth and down my throat. Because I did not have an anaphylactic response, my doctor decided to try and manage the reaction with premeds. He ordered 50mg of Benadryl and 40mg of Solumedrol. I no longer get the hives. My GI also sent me to an allergist to confirm the hives were a reaction to the drug. The allergist confirmed they were and said he would have forbade me continuing to take the med but by time he saw me I had had a few infusions with the premeds and the hives were stopping. Because I had failed all other meds and the only option left was to remove my colon, my GI did not want me to stop Entyvio if he could find a way to suppress the reaction. I'm glad he did.

Also I get congested with every infusion. It doesn't make sense because it works in the gut but I always feel like I have a small cold for a few days afterwards.

I hope me sharing my experience helps you. Entyvio has been the best med for me. I hope it works just as well for you.
 
Wow, MrsManley thank you so much for your response!! That is very helpful to know that I'm not the only one the hives/congestion happened to. It's a little scary to know that it can get that bad that it's even in your mouth though. You said this happened on your fourth infusion. So did you not get any hives on the 5th one? Or did they decrease gradually (less and less over time with the premeds)?
 
Nice to know I'm not alone on this for sure. Last few times with my infusion the itching has been getting worse. Also have the cough which both are side effects. The tiredness and aching is driving me nuts too. Talking to GI next week, thinking of going off this medication and back on my really strict diet.
 
GI Jane said:
Nice to know I'm not alone on this for sure. Last few times with my infusion the itching has been getting worse. Also have the cough which both are side effects. The tiredness and aching is driving me nuts too. Talking to GI next week, thinking of going off this medication and back on my really strict diet.
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Be careful, Jane. I went off Remicade a few years ago and i had a flare.
 
GI Jane said:
Nice to know I'm not alone on this for sure. Last few times with my infusion the itching has been getting worse. Also have the cough which both are side effects. The tiredness and aching is driving me nuts too. Talking to GI next week, thinking of going off this medication and back on my really strict diet.
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Jane, its worth a try, I fully understand what you are going through. I had similar problems with Remicade and went off of it after the 3rd infusion. At my age I am through with the treatments and their side effects. I am a firm believer that side effects are the body's way of sending up warnings of toxicity. I think of it as burning both ends of the candle.
I have gone on a strict diet and found natural ways to control the scourge. I found powdered Turmeric effective in maintaining a level of remission. I still have some bad days, but overall I am doing well without the chemical load on my kidneys and liver.

Having said that for others who are reading this who have had good success with treatments such as the biologics, I would recommend staying on them for we are all different.
 
I am currently on Entyvio and signed up with the Entyvio co-pay assistance. I am turning 65 in December so will be going on Medicare. Has anyone gone thru this transition with the Entyvio Manufacturer? I was wondering if I will still be able to receive their help?
 
Under medicare part B Entyvio is a covered medication. You should enroll in a secondary policy to cover the 20% medicare does not pay. My medicare plus secondary pays 100% of the $6500 every two months.... good luck


:smile::smile::smile::smile::smile::smile::smile::lol2::lol2::lol2::lol2::lol2:
 
Hi all fellow Crohns sufferer here. Ive been on Entvyio for about 2yrs now. I must say that it has really helped me. While im not in remission my bloating and swelling of the gut has been almost gone. But i too am suffering from ankle,wrist, and hand joint pain. I would never personally stop taking entvyio because of joint pain. Entvyio has given me a tiny glimmer of hope tjat they are getting closer to figuring out a cure to this disease. Now if they could figure out how i can be on high dosses of prednisone and flagyl without those drugs killing me. Maybe then ill be close to a normal life.
I also wanted to say to all that get any type of IV infusions and struggle with dehydration from Crohns. I respond to all meds better if they are IV injected. So i asked my Dr to add a full bag of IV fluids with my entvyio infusions. At least it helps for a few days getting the IV fluids in bulk instead of the tiny flush bag of fluids they usially push thru on infusuons.

Robert
 
kimmidwife said:
Are you allowed to have breakfast before your infusion? Just curious the old infusion center we went to said no but the new one did not tell us beforehand.
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I know this was a oldpost but i wanted to reply so others might see the answer.
Yes you can eat. I actually get my infusions in the a.m. from my local hospital because they are much better at starting IV. Local cancer infusion center worked well but they had trouble starting the IV since i have no viable veins left in my lower arms.
Anyways at the hospital its much better now and they actually take a breakfast order and feed me breakfast while i get the entvyio and the largest bag of fluids i can get.
Hope that helps someone.
 
Sorry this is so long but My question is: Has anyone on this forum developed GERD after beginning Entyvio treatment?

This has been my experience since I began Entyvio: I started taking Entyvio November 8, 2018. Since taking my May 2018 infusion, it is the first time I have not had to take prednisone within a month after an infusion. I have not had any of the hives others have talked about. I did have three episodes of a cold/bronchitis from November thru February that left me with a horrible chronic cough. Tested for allergies, negative, given antibiotic twice -FINALLY got rid of the bronchitis like cough.

In January I was was diagnosed with acid re-flux/GERD. This is a condition that I've never had a problem with in the past - (maybe if I ate too much fried chicken from a fast food place). The symptoms of acid reflux got so bad that it felt like it had burned my throat, felt like my stomach had too much food in it even in the morning. Well, made a trip to ER, they did a CT of my throat/esophagus swallowing mechanisms which were working fine and then told me I had GERD and prescribed drugs to treat it! My primary care doctor sent me to an ENT to check for damage at back of throat -- nothing major. Told me to keep taking my GERD medicine! My GI doc sent me for an MRI to see if if something else might be going on in my gut - no active Crohn's at the time. Well, now I take a PPI and renatidine for the GERD. I've reduced my food volume and eliminated foods that are known offenders and take those meds -- GERD is at bay but not absent and by third meal of the day I can't eat much at all! However, bowel is working perfectly! Go figure!!!

Anyone have this problem when taking Entyvio????
 
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That's funny I go around lunch time and they feed me too. Do it because Seattle traffic is the worse! I get acid reflux sometimes too. Have ranitidine that I take occasionally. Was on Prilosec back in the day but they took me off of that a few years back. Like you I try to watch my diet.
 
Hello.
Has anyone had blurred vision or loss of vision during Entyvio's infusion?
I made 3 infusions after a severe allergic reaction that I had with inflixmab. Twice my vision was blurred. I also had abdominal pain and anal bleeding. Curious, because before starting this medication I did all the exams, including a colonoscopy where it said that the disease was in remission. today after a surgery my doctor says that my only option is Enyvio and that I should go back to him. but I'm afraid, after that experience I had an increase in the degree of vision. Has anyone else experienced these symptoms? Today, after 5 years of infliximab, I have developed many food allergies. I have presented anaphylaxis with this medication and I am also afraid that it may happen coming back to entyvio.
 
No, I have never had anything like that with Entyvio. It is a totally different drug than infliximab.

I had a couple of infusion reaction with I tried to go back on infliximab after being off for a number of years. Switched to Stelara and then Entyvio with not problems.

Veloso said:
Hello.
Has anyone had blurred vision or loss of vision during Entyvio's infusion?
I made 3 infusions after a severe allergic reaction that I had with inflixmab. Twice my vision was blurred. I also had abdominal pain and anal bleeding. Curious, because before starting this medication I did all the exams, including a colonoscopy where it said that the disease was in remission. today after a surgery my doctor says that my only option is Enyvio and that I should go back to him. but I'm afraid, after that experience I had an increase in the degree of vision. Has anyone else experienced these symptoms? Today, after 5 years of infliximab, I have developed many food allergies. I have presented anaphylaxis with this medication and I am also afraid that it may happen coming back to entyvio.
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lgpcarter said:
No, I have never had anything like that with Entyvio. It is a totally different drug than infliximab.

I had a couple of infusion reaction with I tried to go back on infliximab after being off for a number of years. Switched to Stelara and then Entyvio with not problems.
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I have never had a reaction like yours to Entyvio. No problems at all for me. What about trying humors or stelara?
 
PC TX said:
Sorry this is so long but My question is: Has anyone on this forum developed GERD after beginning Entyvio treatment?

This has been my experience since I began Entyvio: I started taking Entyvio November 8, 2018. Since taking my May 2018 infusion, it is the first time I have not had to take prednisone within a month after an infusion. I have not had any of the hives others have talked about. I did have three episodes of a cold/bronchitis from November thru February that left me with a horrible chronic cough. Tested for allergies, negative, given antibiotic twice -FINALLY got rid of the bronchitis like cough.

In January I was was diagnosed with acid re-flux/GERD. This is a condition that I've never had a problem with in the past - (maybe if I ate too much fried chicken from a fast food place). The symptoms of acid reflux got so bad that it felt like it had burned my throat, felt like my stomach had too much food in it even in the morning. Well, made a trip to ER, they did a CT of my throat/esophagus swallowing mechanisms which were working fine and then told me I had GERD and prescribed drugs to treat it! My primary care doctor sent me to an ENT to check for damage at back of throat -- nothing major. Told me to keep taking my GERD medicine! My GI doc sent me for an MRI to see if if something else might be going on in my gut - no active Crohn's at the time. Well, now I take a PPI and renatidine for the GERD. I've reduced my food volume and eliminated foods that are known offenders and take those meds -- GERD is at bay but not absent and by third meal of the day I can't eat much at all! However, bowel is working perfectly! Go figure!!!

Anyone have this problem when taking Entyvio????
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I started to have GERD after i took prednisone and entyvio. It's been one year now. Was terrible as you at the begining and got much better then but with up and downs. I'm puting it more on prednisone than entyvio as it is proven steroids have bad effects on stomach. I had ppi to treat it but i'm now trying to manage it through diet and supplements like ginger and curcumin. I consulted an Osteopath which helped me a lot too as I was having pain in my back and muscle tensions caused by this GERD.
 
Anyone on shorter intervals than 4 weeks or higher doses than the standard 30mg? I see some improvement after an infusion but usually 2 weeks to 10 days before the next one, everything is terrible again.
 
Not sure any doctor will prescribe it at hogher rate than every 4 weeks... standard procedures are every 4 or every 8

For how long have you been on it? It may take a while to kick in... entyvio disable some new white blood cell to activate in the intestine... old white blood cells may still activate and promote inflammation before they naturally die after weeks/months...
 
Been on it for 3 years. Moved to monthly doses a year ago. Pretty discouraged as I have tried and failed every other medication out there. Added Humira Two months ago (trying it for second time) and haven’t seen any improvement.
 
Sorry to hear that. If you failed every other drug then your doctor may suggest to try something new... could be increasing the doses, or new drugs in trial.
Did entyvio worked at the begining? Have you tried stelara?
 
Guerrero said:
Sorry to hear that. If you failed every other drug then your doctor may suggest to try something new... could be increasing the doses, or new drugs in trial.
Did entyvio worked at the begining? Have you tried stelara?
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Yes, I have tried Stelara. Might go back to it (with the Enytvio) if current experiment fails. Saw my GI today - Humira levels virtually undetectable in my blood. Antibody tests not back yet. Moving to 2 Humira shots/week.

Entyvio sort of works - I get 10 days -2 weeks of benefit and then and it wears off before next infusion. They do have tests to measure levels, but poorly understood, apparently, and no one on doses higher than 300/month at this point.

Pretty discouraged.
 
Ok sorry to hear that, but hang on, dual therapy could work better. Let us know how it works.
Hope you'll feel better soon.
 
Entyvio only works about 10 days for me too. GI keeps threatening another medication with it not sure what at this point. Thinking of escaping to the woods for a month and only eat healthy and see how that goes.
 
GI Jane said:
Entyvio only works about 10 days for me too. GI keeps threatening another medication with it not sure what at this point. Thinking of escaping to the woods for a month and only eat healthy and see how that goes.
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Doesn’t seem to matter what I eat at this point. Not eating much now. Doing 2 Humira shots weekly in addition to monthly Entyvio. Doc says Stlearab(again) would be next step if Humira antibodies (test pending) or we can’t get levels up.
 
lgpcarter said:
Doesn’t seem to matter what I eat at this point. Not eating much now. Doing 2 Humira shots weekly in addition to monthly Entyvio. Doc says Stlearab(again) would be next step if Humira antibodies (test pending) or we can’t get levels up.
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Yeah also in my case food doesnt seem to have much impact on inflammation. I hope you'll feel better soon... this disease is such mysterious especially how everyone react so differently to treatments...
 
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?
 
Guerrero said:
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?
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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.
 
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..
 
Guerrero said:
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..
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hopefully going back to every 4 weeks will do the trick! Have you switched back yet?
 
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
 
GI Jane said:
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
Click to expand...

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.
 
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.
Click to expand...
 
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
 
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
 
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!
 
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.
 
Guerrero said:
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.
Click to expand...

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.
 
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/new...tagonist-therapy-in-real-world-data-analysis/

Considering your story and your doctor recommendation to try it, I think entyvio could be indeed a very good option for you.
 
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!
 
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%:sign0085::sign0085::sign0085::sign0085:
 
Phartologist said:
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%:sign0085::sign0085::sign0085::sign0085:
Click to expand...

My quote it people with Crohn's never fart....way to dangerous lol.
 
Grandma McB said:
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!
Click to expand...

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.
 
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:hallo3::hallo3: and I went to 25mg/day. The 25 and 50mg per day of 6MP was causing squamous cell skin cancer:thumbdown::thumbdown:s. After the 7th cancer I decided to drop the 6MP. No more cancers and no ill effects.:dusty::dusty:
I know of another person who was on Imuran and had her liver numbers go through the roof:frown:


Good luck
 
I've been on Humira for 5 years, but the psoriasis side effect is eating me alive. Itching spots happen all over my body, and sometimes they turn into pimple like things that get hard and sore as hell and then pop, sometimes getting infected. My scalp itches and flakes like mad even after Cetaphil 3 times a day.

I've had 3 or 4 of these sores at a time under my arms. Two weeks ago my dermatologist did a biopsy on my forearm because he thinks Humira should PREVENT psoriasis. Despite keeping it clean and covered it got infected, and simultaneously I developed a matching sore on the other forearm. They were so angry looking my dermatologist put me on 500 mg of Keflex 3 times a day. The biopsy, BTW, showed it was probably a side effect of some medicine.

My Gi says we can try Entyvio but can't guarantee that it will work; he says I might develop antibodies and lose Humira as well.

Anybody have this psoriasis plague? They say Entyvio will probably work with fewer side effects.
 
I went from Humira to Entyvio about 2 years ago. Humira anti bodies were building up, making the medicine not effective. Entyvio has been much easier for me. Infusions once every 8 weeks. I have had no side effects from Entyvio or Humira. Entyvio has not been quite as effective as Humira was at its peak, but much better than Humira at the end. I would definitely try Entyvio if I was you Jeff G
 
I wish you all an happy new year!
I'm having a lot of noise and bloating after the end of year dinner, but still fighting :)
 
JackG did they rule outs Sweets syndrome with the biopsies ?
It can come in all forms of skin lesions and rashes
And is an EIM of Crohns
Most Dermatologist miss it since it’s rare and don’t look for it
Good luck
 
JackG said:
I've been on Humira for 5 years, but the psoriasis side effect is eating me alive. Itching spots happen all over my body, and sometimes they turn into pimple like things that get hard and sore as hell and then pop, sometimes getting infected. My scalp itches and flakes like mad even after Cetaphil 3 times a day.

I've had 3 or 4 of these sores at a time under my arms. Two weeks ago my dermatologist did a biopsy on my forearm because he thinks Humira should PREVENT psoriasis. Despite keeping it clean and covered it got infected, and simultaneously I developed a matching sore on the other forearm. They were so angry looking my dermatologist put me on 500 mg of Keflex 3 times a day. The biopsy, BTW, showed it was probably a side effect of some medicine.

My Gi says we can try Entyvio but can't guarantee that it will work; he says I might develop antibodies and lose Humira as well.

Anybody have this psoriasis plague? They say Entyvio will probably work with fewer side effects.
Click to expand...

I had to go on prescription for scalp issues from the cocktail of meds I was on before Entivio. It was really bad. Since on Entivio no issue now. I do get the 2-3 day headache after infusion but I'll take it for how great my blood work looks now. Take care.
 
I am going to get my first Entyvio infusion on April 3rd, and having read so many horror stories, I am understandably concerned, but my Crohn's Colitis is so far gone that I can not take any oral meds, and I was on Remicade about three-years ago and had a LOT of success with it, but got off of it because I "found" Veganism which is the reason that I'm going TO get Entyvio.

I'm writing this post in order to get updates from this thread, but if anyone has advice for someone who is getting their first Entyvio IV, please let me know.

I plan on taking Benadryl before they begin the infusion.
 
Snitzer1 said:
I am going to get my first Entyvio infusion on April 3rd, and having read so many horror stories, I am understandably concerned, but my Crohn's Colitis is so far gone that I can not take any oral meds, and I was on Remicade about three-years ago and had a LOT of success with it, but got off of it because I "found" Veganism which is the reason that I'm going TO get Entyvio.

I'm writing this post in order to get updates from this thread, but if anyone has advice for someone who is getting their first Entyvio IV, please let me know.

I plan on taking Benadryl before they begin the infusion.
Click to expand...

Try not to worry too much - lots of people do great on E. It targets the gut so it not a systemic immune suppressant like Remicade and therefore has far fewer side effects.

I'm due for my 5th infusion in a couple of weeks and I feel way better in E than I did on Remicade. The one thing to keep in mind is that it can take a while, up to 6 months or sometimes more, to reach full effectiveness.

In terms of the Benadryl - I not sure you'll you would need that, best to discuss with your medical team.
 
Jonny84 said:
Try not to worry too much - lots of people do great on E. It targets the gut so it not a systemic immune suppressant like Remicade and therefore has far fewer side effects.

I'm due for my 5th infusion in a couple of weeks and I feel way better in E than I did on Remicade. The one thing to keep in mind is that it can take a while, up to 6 months or sometimes more, to reach full effectiveness.

In terms of the Benadryl - I not sure you'll you would need that, best to discuss with your medical team.
Click to expand...

I really appreciate your take on this.

I have some black and white thinking as in OCD and its sometimes a pain for me to think in the gray areas in between the worse-case scenarios .

Its very easy to let one's imagination get on fire after reading the most extreme adverse reactions.

The nurse practicioner told me that I could take a Benadryl before my infusion, but you are correct; I will check with the staff at the infusion center as far as IF I should take it and/or how much of a dose or if I can request them to have the Benadryl in my IV line.
 
Jonny84 said:
Try not to worry too much - lots of people do great on E. It targets the gut so it not a systemic immune suppressant like Remicade and therefore has far fewer side effects.

I'm due for my 5th infusion in a couple of weeks and I feel way better in E than I did on Remicade. The one thing to keep in mind is that it can take a while, up to 6 months or sometimes more, to reach full effectiveness.

In terms of the Benadryl - I not sure you'll you would need that, best to discuss with your medical team.
Click to expand...

How long did it take for you to begin to see any positive effects?
 
I did feel better after my first infusion but it was after the fourth that I really felt a big difference. Got my fifth coming up in a week and a half so expecting to feel even been better after that. My calprotectin has been excellent and since it takes 6 months for E to reach full effectiveness then I'm hopefully on my way to being very well afrer the next few infusions.
 
Thanks for letting me know.


And I forgot to ask if you have any of the more common post-infusion side-effects such as extreme fatigue.
 
No side effects so far. Other than my Crohn's being better there have been no other effects and I'm a lot less fatigued than I was on remicade.
 
Jonny84 said:
I did feel better after my first infusion but it was after the fourth that I really felt a big difference. Got my fifth coming up in a week and a half so expecting to feel even been better after that. My calprotectin has been excellent and since it takes 6 months for E to reach full effectiveness then I'm hopefully on my way to being very well afrer the next few infusions.
Click to expand...

Hi jonny84, thats great to hear.
I’m curious about your calprotectin, mine went better but still around 200, how is yours? Lower than 100?
 
Guerrero said:
Hi jonny84, thats great to hear.
I’m curious about your calprotectin, mine went better but still around 200, how is yours? Lower than 100?
Click to expand...

Yeah - mine was 20 on the last test, which is the lowest its ever been. Can't get better than that really...
 
I just read a few dozen side-effects to Entyvio posts on this thread and I'm listing my own symptoms in hopes that it will give others some relief as far as wondering what the hell is going on:


I had my first infusion about one week ago and my main symptoms are:

-Deep fatigue, mainly in the afternoon.

-Some brain fog

-Increased frequency of bowel movements including diarrhea, some gas with tenesmus


-Some cramping in my lower abdomen which is more noticeable when I am sitting down (as someone else mentioned)

-Mild back pain

-Some chills at night

-General loss of appetite


I have Crohn's Colitis and the only other medications I take are 12.5 Mg of Prednisone and 1/2 Mg of Klonopin as needed.

CBD oil does help with the cramps.

 
This is responding to multiple posts about side effects of Entyvio. Most of my side effects did not start until 1-1.5 years on Entyvio (I've been on it about 3 years). But now they are affecting my quality of life. I am dizzy, foggy, sleepy almost every day, sometimes for the whole day and sometimes part of it. I am having hair loss (I see strands of hair on the floor every day). I have Ulcerative colitis, not Crohns. My doctor says all the drugs have side effects and it's not clear if other medications would be as effective at keeping the colitis symptoms under control as the Entyvio. It may be that they don't know how to get someone off Entyvio and on to another medication -- which is concerning for them. It's either

Posting here on the forum is a way to get moral support, but it doesn't have an effect on Takeda (mfr /distributor of the drug).

You MUST call Entyvio Connect. 855 368 9846
They have pharmacists who answer to calls. Report your symptoms. Ask if Takeda has any recommendations for how to prevent or cope with those side effects. It's the ONLY way things will change.
 

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