Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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Memmy29 said:
The joint pain is unbearable. The RN told me it should dissipate within 72 hours of the infusion but it is all the time now. I'm not sure what to do. She said no aleve. Anyone else taking something for joint pain? Just had my third infusion and the Crohn's has improved, but this joint pain is so bad I'm on crutches.
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I am taking norco for the joint pain. It is really bad for me as well.
 
Memmyy29: half a tramadol plus two extra strength tylenol helps with the pain. my pain has lasted much longer than 72 hours, it seems to last the whole 8 weeks but it gets slowly better over time. by the end of my last eight weeks, two tylenol were doing the trick. after my most recent infusion a week ago, the tramadol and tylenol are doing an okay job...not great but okay.

mugsymagoos: my doc has good things to say about Stelara for Crohn's. unfortunately it's not FDA approved for Crohn's which means a fight with the insurance company in order to get them to cover it.
 
My doc is telling me to take prednisone. I can't take other pain stuff because I'm trying to get pregnant. This is all so frustrating :( hope the pain gets better for you all.
 
john/char said:
Amy I was sorry to hear the side effects you reported. I certainly hope things are better now. Bloating and gas are issues my husband has with this disease. He is getting his 3rd infusion this week and I certainly hope it is not going to get worse. Please report your current situation. Your help will be appreciated.
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I've had crohn's for 15 years & ileostomy for 4 & have tried every drug available, without much success. Right now I'm taking 6 MP & on Cimzia for the 2nd time. I also have a gastro Dr at Mayo in Minnesota & wonderful surgeon. They have saved my life twice when Chicago didn't have a clue what to do. I'm still recovering from my 19th surgery & if I need more intestine removed, I'll have to get permanent feeding tube. Dr's tell me I'm running out of options, but remain hopeful. I need to find a local GI, cause Mayo says I need a whole team close & far & not driving to Mayo's in the winter. Anyone know of a good one that can work with severe Crohn's with lots of complications? I took prednisone for 10 years, it got me out of surgery for awhile, but did permanent damage. So think twice before taking it, made me feel great but wasn't worth all the damage & coming off is so horrible.
 
Just an update: I'm taking 10 mg a day of prednisone now and it seems to be making a big difference. Hopefully it'll get the inflammation under control until the Entyvio kicks in. Fingers crossed for all if you too.
 
I've had 5 infusions so far (maybe 6?). I've been lucky enough not to experience the side effects that plague many on this thread. But I do notice that my BMs tend to have a lot more volume, and I love only go 3-4 times a day. I also become wicked gassy, but that only upsets my wife. She does not appreciate a good Dutch Oven.
 
Has anyone experienced issues right before their next infusion? Number 4 is Tuesday the 13th but since Monday the 5th I've been beyond sick. Dr. is considering adding a second medication because of the increased symptoms. I'm also experiencing the same symptoms that I get after the infusion, extreme fatigue, horrible headaches, and joint pain. Anyone have any suggestions on what could be going on?
 
CLCH87, you're still early yet... The Entyvio probably hasn't kicked in fully. I was very up and down before my 14 week mark. My doctor has reminded me again and again that this is a slow acting drug. Patients who tolerate it do better and better over the course of their first year. A second med might be a good idea to get you through. I take oral methotrexate and it's been a life saver. Now tapering off the MTX because the entyvio has started working pretty well. Good luck and hang in there.
 
I just had my third infusion and belly pain is getting better. Now my joints are the main problem. I also developed Iritis today.
 
I think I should get an award for my infusion this week. Just starting after 9 attempts of getting a line in. We finally got one started in my foot.
 
sully1102 said:
IV in the foot? Yikes! I thought 3 attempts was a bad day. Were you dehydrated?
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I don't see how I could have been, I've been drinking non-stop because I have small veins as it is. Every line they got in became infiltrated. Probably the most painful thing, and it was 3 attempts in my feet alone.
 
I haven't been here in awhile...

My 5th infusion is this coming Monday. I still have good days and bad days, though I am doing pretty well now that I've thrown in the towel and am taking Uceris every day (I had been trying to maintain at every other day or so, and had tried to come off of it as well). I'm definitely better on Uceris + Entyvio than I was on Uceris alone, so I assume it is doing something...

I saw my gastro at the beginning of the month, and the current opinion amongst IBD specialists is that this stuff can take 6-7 months (you read that right, MONTHS) before seeing a response (and in some cases, up to 9 months). That's response, not remission. I was advised to be patient. I continue to have much better energy levels, which is helping to keep me encouraged.

However, I got sick a week before my 4th infusion, and 4 weeks after that, which has us concerned that I may be one of the folks who need infusions more frequently (there was a subset of patients in the trials who improved, but got sick when placed on an every-eight-weeks dosing schedule - they got better when given Entyvio every four weeks). We're sticking with the schedule for now, but if I have another setback at 4-5 weeks after the next infusion, my doctor is going to petition my insurance for more frequent dosing (I have a feeling that it will be denied - I haven't seen many US folks succeed in this). In the meantime, I'm going to just stay on Uceris...I was probably pushing it when trying to take it less frequently/taper down (I know of another person whose gastro told her not to even think about coming off Uceris until she had been on Entyvio for six months).

As for side effects, I still only experience fatigue for a day or two starting two days after the infusion - though it didn't seem as bad after the last one, so perhaps I am acclimating.

I hope everyone is hanging in there...
 
Glad things are improving for you Landshark! Nice to hear from you on here.

My 4th infusion will be Feb. 17th, so a ways behind you but I've continued to notice really positive improvements and the rougher days seem to be more predictable based on the medication schedule I'm currently on. Rough days tend to involve higher fatigue/ exhaustion levels rather then searing pain, etc. Undeniable improvement, hands down.

I've been feeling much better since beginning 25mg MTX injections in conjunction with Entyvio while working to get off of Prednisone. Been holding at 10mg while waiting on the MTX to build up in my system and will probably start working on tapering that final 10 in the upcoming weeks.

Following your 4th infusion were you sick from increased flare or from an infection or secondary illness? I struggled with an infection following the second infusion and was discouraged since it was difficult to discern whether the Entyvio wasn't doing anything, or whether something else was going on since I'd been seeing a bit more energy even after the first infusion (although it is easy to recognize the most minor improvements when feeling such an epic level of terrible). Seemed like all tanked following the second, or simply wasn't holding. However, the 3rd left me feeling more like I recognized following the first - ever improving energy levels, generally lowered pain, increased appetite, etc. I hope that your being ill mid-schedule isn't a regular occurrence as you keep going with the Entyvio.

It is certainly frustrating at times to need additional medications, but maybe with enough time - like you pointed out it is more along the line of months to start seeing strong response/ potential remission - I'll be able to taper off the MTX and you your Uceris!

Wishing you all the best as you go in for your 5th infusion, I hope the period of increased wellness continues to improve for you.
 
Been awhile since I've updated my Entyvio experiences. Going in for infusion #5 tomorrow (Friday January 16, 2015). I'm still on Prednisone at attempted slowly tapering doses (currently 30mg) in addition to Entyvio. I seem to get the fatigue for a few days following the infusion, but not completely debilitating. Had a setback during the holidays (was down to 15 mg of Pred) and started passing a lot of blood, so I kicked up the Pred to 50mg and it stopped. I've certainly been putting on some weight though. Bm's are in the 3 to 6/day range, but not consistent. A day here and there even have had zero! It seems like I get bloated after eating at times as well. Just had bloodwork done and things seem to be settling into the "normal" range of things. Colonoscopy is scheduled for Jan 29th-lets hope its some good news! I'll let you know what the consensus is.
 
Hi Everyone,

I started in late Sept and i think i have hit a plateau with moderate success at best. im thinking of coming off and going back to humira due to the side effects (extreme fatigue and bloating)

1. How long did it take you guys to plateau?
2. Are you experiencing the same side effects (extreme fatigue and bloating) as i am? and if so how are you dealing with it

many thanks
 
Hey Uberreem,

I also started late september and felt like i hit a plateau after this last infusion. Felt awesome up until about 2 weeks ago then back to seeing increase in blood, increase in pain (although in a different area then I've experienced this last 2 years), not the bloating like earlier at the start of Entyvio and fatigue has always been a constant although exhaustion initially lessened a bit and has been pretty much holding there ever since.

Anyways, just met with my GI today. Will get an MRI in the upcoming weeks since I had a scope in Nov. that did show less inflammation in large bowel. Consensus was essentially that Entyvio is really really really slow working. Compared to Remicade for ex. where by the 3rd infusion most are pretty much ready to take on the world again, Entyvio's more like that around the 1 year mark. Generally speaking.

How I'm taking this: for me, the improvements since starting Entyvio are worth continuing to see what will happen. Any side effects/ recent increases in symptoms and discomfort aren't enough to really deter me compared to what I was experiencing before. Since it takes so long and I'm already in this far I figure what's another 5-6 months? If it's not a huge life-changing difference I'll consider other possibilities after giving the full wait. I just don't want to try returning to biologics I moved away from for reasons like reduced response or repeating infections, run up against the same issues, and be back to prednisone, Entyvio or a combo of minimally responsive meds. waiting for something new to come out.
 
hi duh panda

thank you so much for your reply, i too had a point where blood returned and things got a little worse. Since we both started the same time we should ping each other periodically to guage progress.

my gi also convinced me to stay on so i guess for the time being ill tough it out

id love to hear from the others on this one
 
I started in late November and was in crisis then. I think I'm really getting some relief finally. My gut is great. Going once a day like a healthy person! CRP is still high though - 2.7. My joints are the only issue still. Taking 5 mg of prednisone and that keeps it under control.
 
Just had my 5th infusion this morning and feel good. Slightly tired and will nap later, but over all I am pleased with Entyvio. Even the prior weeks leading up to #5 infusion I had felt as good as I did two weeks after an infusion. Yes there has been discomfort with bloating and joint pain but these have subsided. Has the joint pain completely gone away?! No. But I have Crohn's and there will always be issues with joint pain-inflammation and the bloating. My point here is that Entyvio isn't the cure drug, so the symptoms of Crohn's may always be there but less inflamed and each one of us has to decide what that level of toleration of symptoms one can handle. I do feel that I need and want to stay on the 6mp while taking Entyvio. (Having fistulas I just don't want to mess around without 6mp) I still have days where I do feel fatigue but it doesn't last nearly as long as it would on previous med regimens. I have more consistent energy levels that I havent had in a very long time and actually have a healthier glow to my complexion than before. I hope everyone can get to the first 3 - 4 infusions without dispair. These were a rough few months. But it feels worth it so far.
 
I would agree, Kisleeh. I had my fifth infusion last Monday. I am actually doing pretty well. Not normal, but my energy levels are great (I'm getting up at 5:30am to do yoga during the work week - and managing to stay awake until bedtime...this is a minor miracle). Frequency is dropping to a level I'm happy with, urgency is going away too. My appetite has shot through the roof (I am fine with this, I really need to gain some weight, though I'll confess that I will be somewhat aggravated if I outgrow my clothes!). I know some of this is from the Uceris I'm taking (at least the gut effects - it has never done much for appetite or energy), but I know at least some of this is from Entyvio. Just have to stay patient...
 
Hi everyone
Getting ready to discuss Entyvio with my GI
I have been on humira for several months and was wondering, I have read that you shouldn't be on humira and entyvio at the same time but what about waiting for the humira to get out of your system? My GI wants to start Entyvio next week and my last dose of humira was Wednesday. I have already gotten shingles as well as a parasite that I am trying to get rid of, so I am a little concerned about the increased risk of infection with the humira still in my system. I know that taking any of these meds with an infection isn't good , but my GI said after a scope that by the looks of it, I have to go with the humira.
Does anyone know if you have to wait?
My GI said will check into it, but then called to say wants to start next week and I didn't ask.
Side effects seem scary to me ! But I am tired of this --6 months with a Cd flare.
 
Hey Kate, sounds like a concern to bring up with your doc. Call your GI back and get the answers you want/ need before moving forward. After all, it's your body and it sounds like you're dealing with a lot so there are several factors to consider. Can be easy to jump to gun wanting a flare to just end already but moving forward with any doubts can be just as worrisome.

For what it's worth my understanding is that the idea of being as far out from the last infusion of a TNF blocker has more to do with potential interaction then additional compromising of the immune system since the TNF blockers+Entyvio combos weren't tested in trial.

The way it was explained to me when adding Methotrexate on top of already using prednisone and Entyvio regarding immune modulators/ suppressors was that once your immune system is tanked that's how it is. Basically, adding more to the mix may drop it some but not significantly enough where it would outweigh the possible benefits.
 
Thanks guys- I see her today and will get some more info. She did tell me that you have to take methotrexate with it to get it to work and I didn't t see that anywhere in the literature. I did read on this forum that methotrexate helps block the antibodies.
Thanks for your responses. Will keep you posted.
 
Hi-
I saw my GI today I guess between now and the last time I talked to her about the entyvio, she did some research/ talking with colleagues and the drug rep. She changed her mind about the methotrexate. She said she heard that you have a 4 % chance of developing antibodies so why use the methotrexate. Robrich- I guess you are in the 4%? She did say to continue the humira. Schedule wise, I would take it tomorrow but not sure if I will.
Does anyone else feel like a guinea pig? I'm not sure I like this feeling.
 
Kate d actually it wasn't about the antibodies for me it was about needing more immune suppression as my body was overpowering the Entyvio. It's in the same thinking as combination therapy using immune suppressants with a biologic. Sometimes it helps. You don't know until you try and I am running out of options. I did 6 mp with remicade it worked well but I had jaundice and other liver problems so stopped the 6 mp but the remicade worked wonders for many years. Now that my body defeated remicade it was beating everything we threw at it e.g. Humira weekly. This now seems to be working but slowly.
Good luck to you
 
Robrich said:
Kate d actually it wasn't about the antibodies for me it was about needing more immune suppression
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That was the idea behind MTX addition for me as well. Since Entyvio is only proven to treat the large bowel (and takes nearly a year to show full effectiveness) if there is any disease elsewhere it seems additional suppression/ modulation can be necessary. The thought of supporting meds. helping slow/ prevent formation of antibodies seems to be a potential bonus but it's all theory at this stage.
 
I'm now on Entyvio, I've had week 0 and week 2 infusions. I started Uceris the first week of Dec 2014. I've been off Pred since the middle of Dec 2014. Uceris has been wonderful, given me more mobility than Pred ever did, and no wild side effects. Remicade didn't work for me; Humira didn't work for me so onto the Entyvio. One thing I noticed is that before I started Entyvio, the Uceris had me closer to remission than anything else with the exception of high doses of Pred. Once I started Entyvio I noticed blood again and more urgency/times a day than before I started Entyvio. Has anyone else had this issue? I almost feel like I was better off with Uceris only and no Entyvio. I know to get the full effect of the drug it does take a while.

As far as side effects with Entyvio, no noticeable effects with me so far. Just a bit sleepy after the infusion but that's about it. I like the quick 30 mins infusion, much better than Remicade's hurry up and wait. LOL...

E...
 
I started taking Entyvio just 2 weeks ago.

Tried 6mp, Humira, Remicade and now onto this new drug.

I did my 2nd infusion on Tuesday and my stomach feels awful, almost like its raw inside. i definitely feel worse now than i did before. Going to the bathroom 6x a day is getting real annoying.
 
too add onto what ive already said


3 days fter my 2nd infusion i can barely get out of bed/walk

my hip pain is out of control, im only 32 and never had any problems with body pain

my wife called the hotline and they said its a common side effect

after my first infusion i noticed some back pain but i just thought it was from shoveling the snow
 
mastical said:
too add onto what ive already said


3 days fter my 2nd infusion i can barely get out of bed/walk

my hip pain is out of control, im only 32 and never had any problems with body pain

my wife called the hotline and they said its a common side effect

after my first infusion i noticed some back pain but i just thought it was from shoveling the snow
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The first infusions are rough. No doubt about it. Hang in there. Keep hydrated and eat well as you can. Pace yourself too. Give yourself rest and don't overdue yourself. In time your energy level will increase and even an appatite you didn't know you had before.
 
After 6 months on Vedolizumab, Colonoscopy and MRI showed some beginning signs of improvement. Just wanted to post. The GI said this is what they are seeing.. a turn at around 6 months.
 
Hi everyone. I'm new here
I'm a 42 year old female. I've had Crohns since 2006. I've had one bowel resection surgery so far (had an abscess) I just recently had an MRI and the doc wants me to try the Entyvio. I'm afraid though. I had a very bad reaction to both Remicade and Humira. With Remicade, I couldn't get out of bed the next morning. I almost pooped in my drawers waiting for someone to come help me. After that, I had to walk with a cane for two months. I now have constant knee pain and back problems. With humira, I had a bad skin reaction (pretty much the same with Prednisone and Entocort) So my options are limited. I'm afraid to try Entyvio. I don't want to walk with a cane again. Any advice?
 
justjulie42 said:
Hi everyone. I'm new here
I'm a 42 year old female. I've had Crohns since 2006. I've had one bowel resection surgery so far (had an abscess) I just recently had an MRI and the doc wants me to try the Entyvio. I'm afraid though. I had a very bad reaction to both Remicade and Humira. With Remicade, I couldn't get out of bed the next morning. I almost pooped in my drawers waiting for someone to come help me. After that, I had to walk with a cane for two months. I now have constant knee pain and back problems. With humira, I had a bad skin reaction (pretty much the same with Prednisone and Entocort) So my options are limited. I'm afraid to try Entyvio. I don't want to walk with a cane again. Any advice?
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This is a hard one

i havent had any reactions to any of my meds ever, this includes Humira and Remicade. Once the side effects kicked in I seriously thought this drug was killing me at one point. I dont want to tell you to stay away because you may be problem free. If i would have known this would happen to me after each infusion there is no way i would do it. Id rather be drug free and deal with it on my own. You can read my story a few posts up.
 
Wonderful. I Guess I better get my cane out of the closet then. Seems like I don't have much choice. There isn't any other drug choice for me right now. Might just take my chances without it. It's not worth the joint pain. I already have to take pain meds. I certainly don't need to make that problem worse.
 
Everyone is different. Entyvio has made my crohns so much better when nothing else has given me relief, but now I have terrible joint pain.
 
Last week I had my 2nd infusion of Entyvio and am experiencing major mood swings. My doc is sending me to for an MRI but says it's not a side effect. The thing is, this has only taking place since I started this new medicine. I'm not on anything else at the time. Has anyone else experienced this?
 
@cm- funny you should say that. I had the same thing happening around the time of my second one in November. First huge fight with my husband in 6 years. Hope it's nothing to worry about. It seems to have passed. I'm getting my 4th in two weeks.
 
Thanks for replying. My doc is making me out to be nuts but I know it has something to do with the medicine. Glad to hear it dissipates.
 
@cm I chalked it up to the stress that comes with flare, but I know that we are supposed to look out for personality changes bc it can be a symptom of PML. Hope it's nothing!
 
Hi everyone
I start my Entyvio infusions on Wed. Will try to post to let you know how I feel.
Took my last dose of Humira on Thursday. Hopefully that won't be an issue. I asked my GI what other docs were saying about waiting between Humira and Entyvio and her answer was that everyone 's patients are just too sick to wait. I don't find that very reassuring. I do feel like I have no choice than to try it, nothing is working and I had to get my first blood transfusion on Saturday :(
I'll keep you posted. Thanks for reading.
 
To add more to my experience

i was in feeling ok with the leg/back pain monday am, when the afternoon rolled around i started to feel some pain. It started to get worse as the night went on.
i went to be in some pain but not much, i told my wife i think ill feel better when i wake up.

well i went to bed around 10pm and woke up about 1am in severe pain, could barely get out of bed to use the bathroom. tried to sleep it off but it was so bad. I ended up going to the ER because i was 'stuck' in bed and once i got out i could barely walk or stand.

the pain was in my sacrum, the ER folks gave me a drug that begins with a D, two doses and im all better now. They gave me a prescription for lortab. I went to the ER at 2am and left there about 630am.

i had multiple xrays on my pelvis region, i think they thought i was had fallen or got into an accident because of the amount of pain i was in.

xrays were normal but she noticed my sacrum area was swollen and tender. once the drugs wear off il go have my sccript filled and hope that helps get thru the day.


now the big question is should i get my 3rd infusion on march 4th or not, to be honest im terrified as to how entyvio will make me feel.
 
Hi Everyone! I'm new to the forum. I am 26 years old and was diagnosed with Crohn's 13 years ago. I had my first surgery at that time and my second last April. I developed antibodies to cimzia and humira. After surgery it was recommended I start azathioprine. I didn't immediately but later became very ill taking this. My follow up colonoscopy after surgery showed active crohn's. I now will have my first entyvio infusion this Friday. I'm nervous about side effects but really hopeful this will work as the doctor has said this is my last line of treatment.
 
Wishing you the best! Totally understand after three Bowel resections and failed remicade, Humira, and cimzia. Just finished 3rd entyvio and just waiting and hoping for it to really kick in. Just headache and some joint pain as far as side effects go for me. Best of luck!
 
Hi. I'm new.

I've read quite a few of these and I'm now more worried than I am hopeful. I am 26 and was diagnosed with crohns just over 6 months ago, but have likely had it for years. I started Entyvio yesterday. I've never taken anything but steroids and pentasa, so I was very nervous going in.

The infusion was pretty easy, other than some burning and red marks from the benadryl. I had no other effects but being a bit drowsy and nausea, which went away after meds. But I slept badly, and when I woke up this morning and I was floored. I had 5-6 small bowel movements right away and was very weak. My stomach was bloated and my body was stiff.

I went to work and called the nurse after having a few stomach pains that had me doubled over. She said that entyvio does not affect the stomach, and that it was just the body reacting to/fighting the meds and it would decrease with time. I was full after only a few bites of food, and remained bloated and gassy causing pain all day. Joints seem to be fine. But my whole middle feels raw, almost like stomach acid pains are everywhere.

I go back in two weeks. Really hoping this gets better.
 
Yesterday was my first Entyvio infusion. Pretty uneventful. I haven't noticed any side effects. I felt bloated and had a little stomach pain yesterday, but nothing that wasn't the way I normally feel. No joint pain. Slept ok. Bms are as before. I go back in two weeks. Will post then.
 
Kr81Fl said:
New to the forum and just started Entyvio last week. Hoping it works as I had my colon removed last year.
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Hi - I am new to the forum and this post caught my eye. I too no longer have a colon. It was removed 3 years ago to cure my UC that I had for 15 years. They made a Jpouch out of my small bowel, I had a temporary ileostomy for 8 weeks then they did the take-down surgery by hooking my internal plumbing back up, and life was great for the first year. Then symptoms came back and after 6 months of treating pouchitis a scope was done and they determined 1 1/2 years ago I have Crohn's.

Since my Crohn's diagnosis my maintenance has been Humira and cypro antibiotic. Unfortunately I have still had a couple flairs, the last one in January which landed me in the hospitial for 4 days. So, now my dr wants to add Methotrexate to the mix. From what I have read I don't think I want to even try it.

Others have suggested Entyvio, and I have a question into my dr about it, but I did read on a mayo clinic site stating it works better for UC, and I also read that it targets the large bowel not small. If that's the case doesn't seem like the right drug for me.

Thoughts?

Thanks so much.
Pennie
 
Sorry to hear about all you've been thru, Pennie. I've heard the same- Entyvio targets the large bowl. I have crohns isolated to my large intestine and it's worked wonders for me when no other biologic has. Now if I could only get rid of the awful joint pain...
 
Sally's Mom said:
They made a Jpouch out of my small bowel, I had a temporary ileostomy for 8 weeks then they did the take-down surgery by hooking my internal plumbing back up, and life was great for the first year. Then symptoms came back and after 6 months of treating pouchitis a scope was done and they determined 1 1/2 years ago I have Crohn's.
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Same here, the colon was removed due to excessive damage, but was thought I had UC. Pathologist thought it was UC. Things were great for 6 months, then symptoms arose. Pouchoscopy by GI looked like Crohns of pouch. GI believes Entyvio will still help, we'll see.

Can't comment on the Methotrexate issue. I was told by liver Dr. not to take Methotrexate because I have auto-immune liver disease.
 
Yesterday's infusion went great, it was the 3.5 hour commute home that sucked (should have only been an hour... gotta love all the snow in Boston).

The nurse mentioned that she hadn't heard any complaints about joint pain, but everyone talks about being exhausted after their infusions.
 
Sully- are you having joint issues too? My doctor is explaining it as the listed "arthralgia" side effect. It's been so bad I have used crutches at work a few days...
 
Negative - no point pain for me. I've been blessed in that aspect I guess.

I haven't documented it, but for some reason I think my stools are looser for a day or two after infusion.
 
Hi! I definitely agree with Sully! My BM are worse for about four days after the infusion. And horrible has! (Sorry!! TMI)
 
hello all

Seen my GI yesterday, turns out i fall into the 5% category of people who have severe pain from this med. Im not going to do my 3rd infusion. Look like ill try Cimzia in a couple weeks once this Ent has left my body.
 
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I might be in the same boat. I'm having extreme pain in my ankle, feet joints and fingers. On 10 mg of pred and I can't take it. Which biological are you going back to?
 
Oh ok, I came off cimzia to Entyvio. The Entyvio has been a miracle for my crohns but this joint pain isn't worth it. I've tried remicade and Humira, which both worked great for a few years before losing efficacy. Anyone else have this issue? No idea what to do next.
 
Hi! I had bad experiences with those too! Anaphylaxis from remicade, a tubo ovarian abscess with Humira and cimzia did nothing. Just finished 3rd dose of Entyvio and haven't really noticed any improvement. Definitely joint pain in my hands. Hoping by my fourth dose at then of March that crohns symptoms will get better without more joint pain. It actually wakes me up at night. So nice to have this forum. I have been suffering with this illness for 25 years and three bowel resections and I never talked to anyone about it. Feels nice to not be alone and feel like I am always complaining to people that don't really understand.
 
Memmy29 said:
Oh ok, I came off cimzia to Entyvio. The Entyvio has been a miracle for my crohns but this joint pain isn't worth it. I've tried remicade and Humira, which both worked great for a few years before losing efficacy. Anyone else have this issue? No idea what to do next.
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If you are still in with in the first 1-4 infusions there is painful joint pain, but it gets better. May come and go but it's worth it in the long run. You may even experience abdominal pain as well but it too passes. Even now getting ready for infusion #6 my wrist joints tend to get stiff/swollen and will hurt if pushed too far back but it could be worse. There is consistent energy level and appetite that was never there before Entyvio. Plenty of rest with hydration is key. I found if I make sure I am hydrated well two days prior and after an infusion I tend to have less fatigue and feel less medicine like. It is well worth staying on and I am really looking forward to what #12 infusion will bring.
 
Hi all. I joined this website, well I can't remember when. However, I was searching for some other data and saw this so I thought I might be of some help to many of you. I have been receiving MLN0002/Vedolizumab now branded under Entyvio since 2009. I was in the Gemini II initial trial, my doctor isDr Dryden, you can look him up and the trial which ended, was extended, and now in the long-term monitoring phase since approval has been overall successful in treating the gut parts of Crohns. I've lost track but Im assuming (I'll find for those wondering) im over 70-80 infusions at this point.

There are pros and cons with any medicine, and only you can determine what "you" personally can live with. I have an infusion buddy, a man in his 70s that does not have the side effects I do and many dont. Dr Dryden has stated that my extramanifesting symptoms do not follow the course of disease activity unlike others. If you all are interested, I'll share the pros and cons, and be as honest as I can about Entyvio.
I don't wanna type everything if you all have had someone tell you before, and thus repeat what's already been said😉
I have previously been on everything so I feel qualified to speak on the efficacy of the infusion. :). Be well and God bless!
 
Not sure just how well Entyvio is working with 8 week intervals. Both myself and my dr. want to continue Entyvio with MTX until the 1 year mark before making a call if the disease continues to be unmanageable without prednisone.

Bumped prednisone from 5mg every other day back up to 20mg/ day due to inflammation in feet/ ankles, and return of erythema nodosum as well as what appears to be an increase in disease activity in both small and large colon. Essentially the consensus regarding extraintestinal manifestations is that once the gut is managed everything else should resolve as well.

Certainly makes it difficult to tell whether or not the Entyvio is helping or not and a month of antibiotics due to abdominal fluid build-up throws the gut in its own ways.

Remember someone on here mentioning Entyvio being approved for every 4 weeks and will be mentioning it at my appointment on Tuesday; but was wondering if anyone on here has experience with that? Seems like the main issue with a more frequent infusion schedule would be with insurance coverage.
 
There goal should def be getting you off all steroids. I am unsure why you are on a 8 wk interval schedule. Except for initial dosing, I've been on a schedule of every 4 wks, 8 wks seems too long. I notice right after infusion I experience a few days of what many would call "normal" bowel movements and relief, but by week 4 I'm in need of a dose bad.

The extraintestinal symptoms normally follow course of disease but not always. The inflammatory arthritis I personally have dealt with does not get better despite intestinal improvements. I think more research needs to be done in this area.

Those like myself who continue to have extraintestinal symptoms are often ignored. For example, I noticed in the beginning of the trial for Vedolizumab they seemed concerned with ALL symptoms, toward the end (as the drug was close to being approved) they would push off the symptoms myself or any like me were having as typical. However, when I asked other trial patients, most weren't having these symptoms. So in essence, since large percentage were doing well in all areas, they didn't want to report the ones who weren't. I saw staff fix the numbers many times to keep long-term patients in the study (cause they need that info and govt research money). We are scored each infusion on number of symptoms and if score isn't sufficient, then the parameters set dictated we should be removed from study, however when we didn't meet numbers they would manipulate us into saying we were better than we were arguing "you don't wanna get kicked out of the study do you?"
 
Also, they really have lapsed in judgment regarding PML.

Depending on the visit, patients are required to have labs run, physical performed, EKG, etc. this monitoring continues because of the risk of PML. However, staff would ask the typical questions: any loss in memory, persistent numbness, weakness, trouble speaking etc. if you had any of the symptoms, they would say you want to be sure cause if you end up having any then you have to go through ct scans, mris, testing, etc and its a long process. Basically, they were doing their best to discourage patients from saying they had symptoms cause they didn't want to spend money or time to investigate symptoms further. Scary huh?
 
I too am on the 8 week interval. Trying to wean off steroids, halfway there. Slow going. The 4 week interval was only recently approved. Discussed with doc last time and think I will go to 4weeks after mt next visit.
My only issue is a PA fistula I have a seton very little drainage but probably still have some inflammation in the rectum.
What do you think Sydnee can Entyvio close the fistula?
Also on MTX, augmentin and very paleo.
How much time do I give it? Just had my 5th infusion.
Thanks
 
Appreciate all the info Sydnee! Crazy what happen in trials to get them to go the distance. Certainly disconcerting but at the same time... it was such a relief to see another possibility on the market for treatment. That type of manipulation and tweaking for scientific/ approval purposes is what has always led me to hesitate regarding trials - more so then the fact that it's such a large unknown to begin with.
 
Following up from last time. I am almost two weeks into Entyvio, I go back on Tuesday for my next infusion. So far I had about a week- 8 days of severe stomach/intestinal pain, which caused a lot of swelling of the abdomen, but then had a few days where it subsided more and more. I can definitely see that my crohns symptoms are being reduced, which is the only positive so far. What is worrying me is that I have started to feel ill occasionally, slow (mentally) and weak and elevated heart rate. I go back in on Tuesday so I am worried about this starting all over again. Will follow up in a few days.
 
Got back from meeting with the Dr. and she's immediately pushing for 4 week infusion intervals of Entyvio. Another crohnie in the same office who's also on Entyvio has already been denied for 4 week intervals by their insurance so fingers crossed insurance won't put up too much of a fight!
 
Memmy29 said:
I started in late November and was in crisis then. I think I'm really getting some relief finally. My gut is great. Going once a day like a healthy person! CRP is still high though - 2.7. My joints are the only issue still. Taking 5 mg of prednisone and that keeps it under control.
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I just had my fifth or sixth infusion yesterday and I feel like I'm flaring today. I had felt AWESOME after the 14 week loading phase of entyvio has ended so I'm feeling a little devastated now that I feel this way.

Has anyone observed symptoms immediately after taking it? Sounds like that should probably provide relief but I was literally feeling amazing until today, the day after my infusion.

Curious as to others' observations after being on it a while.
 
I've heard that people have pain and fatigue 72 hours after the infusion. My joint pain lasts though, and is very bad every day. Are you talking abdominal pain or other Crohn's symptoms? Hope it gets better :/
 
Memmy29 said:
I've heard that people have pain and fatigue 72 hours after the infusion. My joint pain lasts though, and is very bad every day. Are you talking abdominal pain or other Crohn's symptoms? Hope it gets better :/
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Thanks very much. It's abdominal pain and mild nausea which scares me b/c those are my cardinal symptoms of active disease. Fatigue also but that's more normal for me anyway so not concerned there. Burning the candle at both ends probably hasn't helped anything.
 
Hi! I will be getting my 4th infusion in 4weeks and the joints in my hands still hurt and burn. The crohns-like symptoms are getting better, but I definitely had worsening symptoms for a few days following each infusion. So odd, right? I certainly hope this hand pain isn't causing permanent damage. It makes me scared. Does anyone else have peri anal crohns as well? That area doesn't seem to be improving for me, but I guess with time and hopefully less BM that will heal. Best to everyone!
 
mamabird said:
Hi! I will be getting my 4th infusion in 4weeks and the joints in my hands still hurt and burn. The crohns-like symptoms are getting better, but I definitely had worsening symptoms for a few days following each infusion. So odd, right? I certainly hope this hand pain isn't causing permanent damage. It makes me scared. Does anyone else have peri anal crohns as well? That area doesn't seem to be improving for me, but I guess with time and hopefully less BM that will heal. Best to everyone!
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I have had perianal fistulas which I had operated on. They haven't come back since Entyvio (or so I hope-- we'll see what this recent episode leads to). Is that the sort of thing you mean by perianal crohns?

When you say your symptoms increase after each infusion, do you mean things like abdominal pain or more non-GI stuff like the hand pain?
 
mamabird said:
Hi! I will be getting my 4th infusion in 4weeks and the joints in my hands still hurt and burn. The crohns-like symptoms are getting better, but I definitely had worsening symptoms for a few days following each infusion. So odd, right? I certainly hope this hand pain isn't causing permanent damage. It makes me scared. Does anyone else have peri anal crohns as well? That area doesn't seem to be improving for me, but I guess with time and hopefully less BM that will heal. Best to everyone!
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Does the pain in your hands ever go away? I have the same thing...doesn't seem to surround the infusions themselves, just all the time. Never had it before Entyvio and it's awful. Swollen fingers and cannot grip things.
 
Hi! I never had this burning joint pain in my hands before the Entyvio. It actually wakes me up! Takes about an hour or two to subside, then it's just painful throughout the day. So annoying because I am always using my hands. Going to see GI in 3weeks before my 4th dose. Don't think he'll have much to say, but will let you know. Best to you
 
I think this is finally starting to really kick in for me, one month after my 4th infusion. I've been feeling a lot better for weeks now, but as of Jan. 9th still had a Sed rate of 101. I had blood work done this past Saturday (Feb. 28th) and I was shocked to receive a call from my GI this morning that my Sed rate is now 53. We had been ready to switch to Remicade, even had insurance approval, and it was such a dramatic drop that he actually thought I had already started the Remicade. Definitely giving Entyvio at least one more infusion now, they're not kidding when they say how slow-acting it is!
 
About 2 weeks out from 5th infusion and I feel the Entyvio certainly makes SOME difference, but it's hard to tell what's doing what at this point.
Joint pain certainly spiked getting to 5mg of prednisone, but that's always kind of been there so I don't think it's related to the Entyvio and neither does anyone else. And with a higher dose of pred. I don't notice joint pain at all after infusion like I was with earlier doses.
Energy levels are a bit improved which does appear related to the Entyvio since energy certainly crashes hard for the 3 or so days before slowly climbing back up and leveling out.

Consensus from several MRI's the last month show a troublesome fistula has developed just below the small bowel, and made its way over to connect to a muscle on the right side of my back, harboring an infection. Will be meeting with a surgeon and having another follow up MRI to try to determine whether or not it's time to take out the really diseased portions and up the odds of Entyvio working to maintain the good parts. Had a similar convo. almost exactly 5 years ago when working to get going on Humira and was able to hold onto my guts for a while longer. Hoping Entyvio (and insurance for 4 week infusions) will come through and I can hold onto them for another 10+!
 
Memmy29. Hi! I don't like to take pain meds so I just deal with it. The burning and stiffness do subside after an hour or so after I wake up. Then it's just annoying until night time when the swelling comes back. I do take a Xanax at night to take the edge off. This winter has been harsh which isn't helping. Hope you feel well today
 
@mamabird- Sounds a lot like what I'm experiencing. Just found out that I'm pregnant so I'm trying my hardest to stick to Tylenol. My ankle joint and joints in my feet burn all morning and then quiet down in the afternoon, then get the worst around bedtime.
 
Congrats memmy29!!! Babies are truly a blessing, especially for us! With my first pregnancy I felt wonderful, it's like I never had crohns. Then, with my second (and final) I was so ill that I had to have a second bowel resection short after. I wish you well and are sending positive thoughts!!!
 
I have had Crohn's for 40 years. After my resection in 2001 I went on azathioprine and then the last 4 years I was on Cimzia. That began to fail last summer and the doctor tried to up the dosage of Cimzia and put me back on 175 mg of azathiopine but that did not work. Decided to jump to Entyvio and took my first infusion on 2/26 and will have the next one 3/12. After the infusion I took a two hour nap and after that I was fine. I have noticed that my joints on my hands are stiff but no pain. Other than that nothing much is different. Not too thrilled to hear that this takes a while to begin working. My GI said that you will notice results between the 5th and 6th doses and shows more improvement the longer you are on it. I decided to go with Entyvio instead of trying Humira or Remacade because according to my doctor Entyvio only suppresses the immune system as it relates to the gut and the lungs. So we will see how this is going to work out.
 
mamabird said:
Hi! I definitely agree with Sully! My BM are worse for about four days after the infusion. And horrible has! (Sorry!! TMI)
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Hello All:
I have had two doses of Entyvio and in 2 weeks will have my third. Other than a little fatigue after the infusions I haven't had many of the bothersome side effects that folks here seem to be mentioning. I know it is supposed to take a long time to reach full effectiveness, but I have actually been feeling a little better already. Knock on wood.

Mamabird and anyone else experiencing this: I have a question about your gassy symptom. I have had terrible gas starting about 1 week after my second infusion. So much so that I'm actually very uncomfortable. This happens every day and usually in the evening. I can't figure out if it's the drug or something I'm eating. UGH.:blush:

Anyway, I was just wondering if this has gotten any better for you after more infusions?

Thanks so much! Hope everyone is having a good day!
 
Hi everyone and saratay 05! I can happily tell you that the gas has gotten a lot better since my last posting about it. Definitely not as painful and uncomfortable. I hope you find improvement soon also!
 
Stomach pain woke me up in the middle of the night so decided since I am up to read all posts in the Entyvio support group. Thought the stomach pain was a flair-up but it appears from what people have posted that this is one of the side effects to Entyvio. So will see how bad it gets.
 
Hi DDClevland! How many infusions have you had? Hope you are feeling better. This drug is taking a very long time to work, but I am definitely seeing some improvements as far as appetite and BM frequency. Hoping for a long term solution after 25 years and three bowel resections. My next surgery will have to be an ostomy and this is my last resort! Best to you!
 
I just had my 4th infusion and the pain in my hands and feet is so bad I'm going to ask my doctor to switch me to either cimzia or remicade. Ive tried steroids and tylenol. Nothing touches it. It's not joint pain. More like burning pain throughout my hands and feet that keeps me up all night. My crohns is great but I can't take this anymore! I'm 5 weeks pregnant...pretty sure my doc won't be thrilled about a switch...
 
My second infusion will be 3/12. I wasn't sure whether the pain was a flair-up or a side effect. I am fine today so I think it is just a side effect of Entyvio. So we'll see what the next infusion brings. It's interesting to read through to see the different responses. Some are going off it because of side effects and others their conditions deteriorate too much before Entyvio kicks in. Seems like you have to be a really patient patient with this one.
 
Memmy29 said:
I just had my 4th infusion and the pain in my hands and feet is so bad I'm going to ask my doctor to switch me to either cimzia or remicade. Ive tried steroids and tylenol. Nothing touches it. It's not joint pain. More like burning pain throughout my hands and feet that keeps me up all night. My crohns is great but I can't take this anymore! I'm 5 weeks pregnant...pretty sure my doc won't be thrilled about a switch...
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Sorry to hear about this burning pain. Just wondering if you had been on another biologic before Entyvio and for how long?
 
Memmy29 said:
I just had my 4th infusion and the pain in my hands and feet is so bad I'm going to ask my doctor to switch me to either cimzia or remicade. Ive tried steroids and tylenol. Nothing touches it. It's not joint pain. More like burning pain throughout my hands and feet that keeps me up all night. My crohns is great but I can't take this anymore! I'm 5 weeks pregnant...pretty sure my doc won't be thrilled about a switch...
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Memmy, so sorry you're having such a tough time. That really stinks.
Are your pains bilateral in small joints only? I was quick to say I didn't have joint pain but over the last few days my right shoulder has been killing me. Can't sleep at all. I attributed it to having rotator cuff surgery last Nov. But now 4 months out I would think it wouldn't be keeping me up at night. This has me wondering if it's Entyvio instead?
Wishing you the best and hope you find something that works for you and that your pregnancy is a terrific experience. As it should be 😊
 

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