Entyvio (Vedolizumab) Support Group

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Sort of random update and don't want to get off topic but I just started a no-grain diet and have been pain free so far. Not changing anything with Entyvio but it's nice not to hurt. For those of you looking to try some new diet options, might be worth a shot.
Was doing low FODMAP but now have cut out the remaining gluten-free grains too. Not easy but was getting desperate. Also will soon be starting low-dose naltrexone.
 
Good luck to you! The food restrictions are so difficult but definitely notice a difference when I fall off the diet.
 
duh panda said:
Met with doc. today. Dropping entyvio and going back to Remicade since I never technically failed but rather switched after 6 months to humira years ago for convenience in college. Will remain on MTX with Remicade for combo treatment. Sounds like she is generally unimpressed with entyvio, and in studies a 4 week dosing schedule didn't show wide enough results across study groups to be approved hence such difficulty getting most insurances to approve. I feel the 8 months I've given it without much improvement at most basic levels in blood work is enough for me to call it at this point. Best of luck to those getting further along and seeing it through or just getting started!
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Sorry to see you leave the entyvio group, but sounds like you have a good plan. I was on Remicade with methotrexate when I was first diagnosed. It worked great and right away. I hope you see long lasting success from that treatment.
 
sk12383 said:
Sort of random update and don't want to get off topic but I just started a no-grain diet and have been pain free so far. Not changing anything with Entyvio but it's nice not to hurt. For those of you looking to try some new diet options, might be worth a shot.
Was doing low FODMAP but now have cut out the remaining gluten-free grains too. Not easy but was getting desperate. Also will soon be starting low-dose naltrexone.
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Glad to hear it's working for you! I am on SCD right now and in conjunction with antibiotics, it really helped calm things down. Now hopefully that will help hold me off until the Enytvio kicks in.

Good luck with the LDN. Did you doctor suggest the LDN with the Enytivio? I'm curious to see how well they work together.
 
Octobergirl said:
Glad to hear it's working for you! I am on SCD right now and in conjunction with antibiotics, it really helped calm things down. Now hopefully that will help hold me off until the Enytvio kicks in.

Good luck with the LDN. Did you doctor suggest the LDN with the Enytivio? I'm curious to see how well they work together.
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Really glad to hear SCD is working for you. I haven't gotten that good with the diet but I'm finishing my 3rd day of no grain and I'm optimistic.

I just took my first LDN a few minutes ago. My GI actually didn't want to prescribe them, but my internist did after I showed him the evidence. He said it's very safe even at the 'usual' dose of 50mg and the Crohn's recommendation is 4.5.

I've heard LDN can take a few weeks to kick in so we'll see how it goes. Good job doing SCD, looks challenging. How long have you been on Entyvio?
 
I am having numbness in my face hands and arms for the past two days since my infusion. Does anyone else have this? I am a little concerned.
 
I do and it definitely gets better as the weeks pass, but still there in my hands and feet especially at night. Almost like a burning sensation. I hope it gets better for you
 
sk12383 said:
Hi all,

I'm curious as to how many of you were also put on an immunomodulator like Imuran at the same time as starting Entyvio. My doc wouldn't b/c there was no prior evidence of efficacy (of course not, I said today, it was brand new!). But certainly it couldn't hurt to try to stop the antibody formation.

Now the docs are saying it's too late to add immunomodulators and my only hope is basically to see if the 4 week entyvio kicks in.

Are those of you on immunomodulators + entyvio doing well?

I was going to have my anastomotic stricture dilated but my new GI went on and on about the risks of performation/ostomy and wants to send me straight to the surgeons to have the anastomosis repaired (my surgeon says he can repair it once more before going to an ostomy).

My thinking is: give the entyvio some more time if possible and go on the strictest diet I can possibly handle, which I'm guessing will be cutting out all grains. Sorry to get off topic, just wondering if anyone had thoughts on all this. I do think 4 week entyvio is better than 8 but doesn't seem to be for everyone. Thanks!
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I was on Cimzia and it began to lose its effectiveness so my doctor put me on Imuran to see if that would help and if it didn't Imuran could be used as a bridge drug to suppress my immune system until Entyvio started working. This was smart because it take like four months for Imuran to be fully effective. By the time I started Entyvio I had already been on Imuran for the four months. There is blood work that is done to see if Imuran dosage can be raise to make it more effective. The doctor bumped it up to 175 mg/day to maximize it's effectiveness. After the three loading doses of Entyvio my Calproten has been cut in half. I would imagine after a certain point where Entyvio has totally kicked in the Imuran will be tapered off.
 
Just an update: I'm 15 weeks pregnant on Entyvio (3 infusions prior to pregnancy and 1 so far during). Seems like everything is going well...fingers crossed. My Crohns has been good, but joints are very bad.
 
Dunerfool said:
I've been following the posts, but have not posted in a while. Going in for my 7th infusion later today (including loading doses). Still having to remain on Prednisone to minimize the symptoms -anything below 20mg/day and I start having issues. I talked with my doctor-who is still insistent that I "simply" have my colon removed due to his "concerns" of me be at high risk for colon cancer since I have had the disease for so long (about 26 years now).
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Crohn's sufferers do have a higher risk of getting colon cancer - but that doesn't mean they will automatically get it. I've had Crohn's for 40 years with no incidence of cancer. I have yearly colonoscopies with biopsies to see if there are any indications of cancer. I am as concerned about colon cancer as anyone but would never think of getting my colon removed just because I have a higher risk of colon cancer.
 
Yea, with all the colonoscopies we have and the polyps that get removed we have a very good chance of them getting whatever might turn cancerous as well. Why would you get your colon removed if your disease does not warrant taking that drastic of a step? That doctor doesn't have to go through that serious surgery and life altering aftercare that a colectomy entails.
 
I'm new to this site and am glad to have found it. I have ulcerative colitis. I have been on Remicade for the past 4 1/2 years. It became ineffective for me so my doctor put me on Entyvio. I had my second infusion today. Here is my experience with it so far.

On the positive side, I am already seeing results. I have bled chronically for the last year and a half. I was passing blood clots, had constant urgency and diarrhea. The blood loss was so great that I have been anemic. I had iron infusions in December 2014 and am currently receiving them again. After my first dose of Entyvio, I have noticed a significant decrease in the bleeding. The blededing is now very minimal. I know this seems unusual to be so effective so quickly based on what so many others are experiencing. I am very hopeful at this point that it is going to work. My only other alternative is a colectomy.

However, the negative is all the side effects. Since my first infusion I have had severe migraines, nausea, diarrhea, loss of appetite, severe lower abdominal pain and a low grade fever. I am hoping they will decrease in time. I told my doctors today about the debilitating migraines. They weren't sure what to say about them as there is so little information with this being a new med. So they are now ordering an MRI of the brain and sinuses with a referral to a neurologist to see if there is something else causing the headaches. It seems a bit overkill but we'll see.

So that has been my experience so far. I am not on any other meds for my UC and going into my infusion, I had not had any other medications since my last Remicade infusion in January of this year.
 
I'm going in for my first infusion today. My wife thinks she should drive me. Are there any side effects where that would be necessary? My docs seem to think not.
 
GABoy said:
I'm going in for my first infusion today. My wife thinks she should drive me. Are there any side effects where that would be necessary? My docs seem to think not.
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They give me lots of benadryl and if you itch like i did afterwards they will give you more but they don't want you to drive. Always good to have a driver, especially if you have a reaction.
 
Thanks, Sehart 717:

I have my wife on stand by. I have to rely on her for so much ... I feel guilty.
 
GABoy,

I would have a driver for your first infusion. No telling if they'll decide to give you premeds or if you'll have a reaction...

I am seven infusions in and I go alone. I do not get premeds and have not had any infusion reactions. My side effects (fatigue, generally) do not begin until a couple days after the infusion. I did, however, have someone join me for that first infusion (though I actually drove myself - if something had happened, I would have had my Mom drive me home).

Anyway. Seven infusions in and I'm doing pretty well. Not off Uceris yet, but down to a tablet every other day. I have gained weight, I sleep through the night, no bleeding, almost no urgency, frequency and such are much improved. Hope it continues after I stop the Uceris (this is certainly better than Uceris alone).

Good luck today!
 
I love to hear success stories! Very inspiring, and I really need to read these right now! Getting my six infusion Tuesday and really hoping this is the winner!
 
I'm glad there's some folks who are responding to Entyvio. My wife has been pretty rough past few weeks unfortunately. The fatigue is what seems to bother her the most. She can deal with the frequent bathroom trips, the pain, and all the other side effects, but when you have virtually no energy to even get out of bed, everything else doesn't matter. We're trying to figure out at what point do we call the doc with all the side effects. Her docs just keep saying stick with it, but it's putting her through hell! Is there anyone here in this forum who has dealt with fistulas and Entyvio? Has there been any success stories as far as the drug helping to repair or close them off? I know Humira can reverse fistulas, but not sure of Entyvio.
 
First infusion today. Took me a minute to wrap my head around it. I'm tired, but that's the only side effect I've noticed.
 
jtwist01 said:
I'm glad there's some folks who are responding to Entyvio. My wife has been pretty rough past few weeks unfortunately. The fatigue is what seems to bother her the most. She can deal with the frequent bathroom trips, the pain, and all the other side effects, but when you have virtually no energy to even get out of bed, everything else doesn't matter. We're trying to figure out at what point do we call the doc with all the side effects. Her docs just keep saying stick with it, but it's putting her through hell! Is there anyone here in this forum who has dealt with fistulas and Entyvio? Has there been any success stories as far as the drug helping to repair or close them off? I know Humira can reverse fistulas, but not sure of Entyvio.
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I had had 2 fistulotomies in the months leading up to starting entyvio. Granted, I did not have one immediately before starting it so I can't say that it closed it up, but I can say that I have not had another fistula since on Entyvio. Since I have a history of fistulas even on other biologics, this strikes me as great sign and I'd be optimistic for you that you could see improvement with fistulas.

Just remember Entyvio does take (I would say) 3-4 months to really work, so keep after it.
 
Completely exhausted today, one day after first infusion. I mean, barely able to keep my eyes open exhausted. Normal?
 
Yeah, that's pretty typical from what I've heard. Mine doesn't start as soon after an infusion, but I do get "knock you on your butt" exhaustion (it was worst after my third infusion and has gotten better from there, but hasn't gone away). For me, it tends to last 1-2 days.
 
After my first infusion I was completely exhausted, barely could keep my eyes open that day. Definitely less tired after each one, but still get those "semi conscious " times. Feel better
 
My GI wants me to try Entyvio. I've failed Remicade, Humira and Methotrexate. When I take 6MP my liver enzymes go crazy. Right now I'm on Budesonide and my symptoms, after a long period of quiet are starting to increase.

I'm worried about the side effects. I just had major surgery to get rid of killer headaches, dizzyness and numbness. I don't want to go right back to headaches, dizzyness and numbness after having part of my skull removed to get rid of them!
 
I've completed two Entyvio injections without any perceptible side-effects. I don't know if that will continue. I had joint pain with Remicade and eventually had to stop due to an allergic reaction. Our bodies seem to have very individual responses to these strong drugs. Just wanted folks to know that its possible to start Entyvio without the hammer dropping. And if you're under the hammer....and we all are sometimes...tons of solidarity and all the best!
 
Just finished infusion #6 and definitely less nausea and less pain in my hands and feet. BM are less watery too! I am afraid to say that this has been the best infusion yet! The fatigue is tough but with two kids there is no resting time. I really hope the perianal problems get better. That's what is giving me the most pain right now. Sending positive thoughts to everyone!!
 
Thank you Blue sky!
Was getting discouraged reading this thread.
I was starting to think everyone had side effects using this stuff.
Glad to hear no effects for you.
Find out next week when / if I start entyvio.
Good health to us all.
Gary
 
So i spoke too soon! Third day after sixth infusion and I feel like garbage! Horrible gas, nausea and D and C at same time. How that's even possible but it is happening. I am so depressed but there is no time! So discouraged, doctor wants to add 6mp. Still thinking about it. Hope everyone is getting through today!
 
Entyvio is such a strange animal. It totally turned my life around, allowed me to return to work, knocked out the bulk of my active disease, but wow it hurts!

Then it started to not work as well, so I went to monthly doses. I'm always so excited to get one, but the resulting abdominal pain is severe! If it was definitely keeping the active disease under control I could push through, but it's hard to know what's happening. After all, abdominal pain is what we're trying to eliminate here yet it seems to be -- at least for me -- a foregone conclusion from taking Entyvio.

Going to get a flex sig in a couple weeks to see the damage. Might be looking at another resection. I had such high hopes for entyvio. At least I haven't had a fistula on it (I can at least appreciate that) but man the gut sure does hurt a lot.

Is that pretty typical for what you all experience on it?
 
Hi there! My son is 19 and has Crohn's disease diagnosed at 6. He also had a liver transplant 3 years ago. He has tried 6mp, Remicade, Humira (antibodies to all now) and they are now deciding between Stelara and entyvio. He is in a big flare up and they keep upping his prednisone. Any thoughts? Bit concerned over the newness of the latter. Thanks!
 
I was feeling so much better until my 2nd infusion yesterday. About 15-20 minutes in, I suddenly felt extremely tired, and lightheaded. I took some fluids after my infusion finished, and left feeling slightly better. By the time I got home, I felt terrible. I laid down on the couch and fell asleep. I woke up about an hour later with a headache, lightheadedness, extreme fatigue. I feel a little better today, but I have a headache and am pretty tired still. This is much worse than the first infusion. Anything to be worried about or is this normal?
 
Hi Jrapp,
Sorry to hear about your son. Sounds like he's had a rough time.
Entyveo is next for me. Start in a couple weeks. I've been on the other drugs, including humira and stelara without success. My Doc explained that Entyveo works differently than the tnf blockers. It is a fairly new treatment for crohns but shows promise for those that have failed the other drugs.
It is next in the process to find out what works best. I think they use prednisone to knock down the condition before they start a new treatment. Obviously, prednisone is not a good long term solution. I know there are some here that have complained of the side effects of entyveo.
I look at it this way... Potential side effects vs. known side effects of out of control crohns.
I trust my Doc. They are experts. Hope your son gets relief with whatever course of action is decided on.
Good luck.
Gary
 
My doctor is telling me that my extreme pain in my lower back, thighs, calves and arms, is related to my disease NOT Entyvio, because Entyvio is not absorbed systemically? What do y'all think of that? I have never had this much body related pain before and no other medication changes have occurred besides Entyvio. Entyvio infusion happened and I got extreme pain so much that I have a hard time walking, I feel like my 90 year old grandmother, I have to anticipate the pain I am going to have each time I get up from a chair or out of a car, walk etc. Anyone else having this?
 
sehart717…Yes! My son started Entyvio and is having exactly the same kind of pain that you have described…in fact it is so bad in his lower back that he now has to be on pain pills daily and some days can hardly work. His GI doctor also said he thinks it is from his disease…but it started exactly after the first infusion. If you look up Entyvio's side effects back and joint pain is listed. Entyvio hasn't worked for him so far and now that have upped the frequency to every 4 weeks…I can only imagine how much worse the side effects are going to be for him. Think its time to try Anti-Map Therapy.
 
My 4th infusion was on June 4. I am waking up with stiff fingers and a little more tired than normal but beyond that everything is fine. Symptoms of Crohn's have gone down. Entyvio appears to be working.
 
Hi! So doc wants to add 6mp to the entyvio and make the infusions every 6 weeks instead of every 8. Anyone doing either one of these options?
 
Mambird,
We are doing methotrexate and entyvio. (my daughter is allergic to 6mp) I think it is a similar idea though. We have not moved to every six as of yet but this week she started with symptoms again and we are seven weeks out so maybe we might eventually be there.
 
Thank you! Just feel so torn as to what to do. Those first two weeks after the infusion are truly horrible but then I do start to feel better til it wares off. Thanks again and we'll see what happens. Best to everyone!
 
mamabird said:
Hi! So doc wants to add 6mp to the entyvio and make the infusions every 6 weeks instead of every 8. Anyone doing either one of these options?
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I'm on Imuran with Entyvio. Imuran actually worked by itself for a while but then lost efficacy. I'm actually staying on the regular dose of Imuran (what I would be on if I were on it alone) while on Entyvio since I get arthritis as one of my symptoms, and I don't want that to flare.

I had my third dose a couple weeks ago and I think things are slightly better, but I had to take Cipro a month ago, and that always gives me a few months of relief, so I don't know for sure if that's what is working. I'm also on SCD and taking herbal antibiotics, so it's hard to know.

I think you mentioned you have fistulas, which I do too. I wish there was more information on if Entyvio helps with fistulas, because right now that's what is bothering me the most.

Hang in there and hope you are feeling healthy soon!
 
Thank you octobergirl! Yes that perianal area is the most troublesome. I think I am going to try the earlier entyvio infusion time and then start the 6pm. I took it alone about 15 years ago and it lost efficacy as well. Thanks for the encouragement and hope you feel well today!
 
Octobergirl said:
I'm on Imuran with Entyvio. Imuran actually worked by itself for a while but then lost efficacy. I'm actually staying on the regular dose of Imuran (what I would be on if I were on it alone) while on Entyvio since I get arthritis as one of my symptoms, and I don't want that to flare.

I had my third dose a couple weeks ago and I think things are slightly better, but I had to take Cipro a month ago, and that always gives me a few months of relief, so I don't know for sure if that's what is working. I'm also on SCD and taking herbal antibiotics, so it's hard to know.

I think you mentioned you have fistulas, which I do too. I wish there was more information on if Entyvio helps with fistulas, because right now that's what is bothering me the most.

Hang in there and hope you are feeling healthy soon!
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Saturday will be my wife's 4th infusion, so far it hasn't done anything to her current fistulas, but she also hasn't had any new ones pop up. Her colo-rectal surgeon will be performing surgery on her current fistulas. So far the medicine still doesn't seem to be doing much, keeping hopes up though. Pouch-failure has been discussed with the surgeon & GI doc, but really hoping that's not what's happening. Been a rough few months for her!
 
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.
 
As far as I know there are no pre infusion food restrictions. I always eat before I go so I don't get dizzy. Good luck!!!
 
Yes, my wife is allowed to eat/drink whatever she feels comfortable eating. Usually just drinks though, as nausea quickly sets in after the infusion.
 
I am allowed to eat before and during my infusion. Also on a side note, I did not have any headaches after this last infusion, wondering if this means it should start working now, it was my 3rd infusion.
 
jtwist01 said:
Saturday will be my wife's 4th infusion, so far it hasn't done anything to her current fistulas, but she also hasn't had any new ones pop up. Her colo-rectal surgeon will be performing surgery on her current fistulas. So far the medicine still doesn't seem to be doing much, keeping hopes up though. Pouch-failure has been discussed with the surgeon & GI doc, but really hoping that's not what's happening. Been a rough few months for her!
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Sorry to hear about your wife's struggles. I hope the surgery goes well for her fistulas. I haven't had surgery yet, but I don't think the ones I have will heal without doing something like surgery, unless it turns out Entyvio actually helps with them.

I've had 3 infusions so far, and I haven't noticed much of a difference either, but I've been told it takes 3 months to really notice a difference. The nurse who does my infusions says the change is so gradual that for most people it's so hard to notice any change in the short term, but over months you should notice a difference. Hope your wife responds soon!
 
hthompson631 said:
I am starting entyvio in the morning. Can you please tell what and if any side effects I will feel or that you have felt.
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I have had 3 infusions so far. The first infusion I only had some fatigue the next day. The second infusion I had a low grade fever the next day. My most recent infusion didn't give me any side effects at all.

Other people have experienced joint pain, which thankfully I haven't despite having had Crohn's related arthritis.

Hopefully you don't have any side effects and the medication works well for you.
 
I've lost count of the number of infusions I've had, but wanted to reiterate that not everyone suffers side effects (I'm lucky enough to be one of them).

For me, this drug is working wonder.
 
That's so awesome to hear. I am finally seeing more good days than bad after 6months. Definitely tough for me with nausea headaches and more D for about a week after each infusion. Best to all!
 
Past the point of when I should have had my next infusion of Entyvio were I to continue... and I feel pretty much the same as I did 8 weeks ago after my last infusion. Which is to say nothing good/ bad to note beyond infection/ immune issues.

Feeling more confident in the decision to move on and not give it any more time since I had really anticipated at least some knockdown during these couple weeks between switching medications and have noticed no mentionable changes and was still unable to taper under 20mg successfully with Entyvio.

Glad to see others are seeing successes with Entyvio and hope to keep seeing more of that as I periodically check this thread.
 
Happy Father's Day to all the dads! I now have a horrible head cold and my entire body hurts! Hope it gets better before next week for me next infusion! Best to all!
 
4th infusion was yesterday. The nurse opted to give the Entyvio over a longer setting this time. Instead of the normal 30-45 minutes, she suggested giving it at half that rate, and my wife accepted. Said that she's had patients that have reported fewer symptoms when it's given this way. She also provided my wife with two full bags of saline solution. I'm sure you all know how easy it is to get dehydrated with Crohn's, (and without a colon!). The extra fluids helped immensely. She's pretty much been sleeping since she got the infusion, but the fatigue was expected. Still keeping our fingers crossed!
 
Went to the doctor today, got all upset because he tried to force me to go in the hospital and I didn't feel like it was necessary. He wants me to get a MRE and colonoscopy, all outpatient tests, why sit in the hospital and have people mess up my medication schedule and take away my ability to eat normal food. I do not do clear liquid diets unless I absolutely have to. Plus he wasn't going to give me any steroids until he did the tests, because it might "mask my symptoms and make my inflammation go away and he wants to see what all is involved" Aren't doctors supposed to want to make inflammation better?

He also said he wanted me to get off of my methadone, he said it was slowing down my bowels, well I need that right now I am going diarrhea 10+ times a day. I don't know why doctors always want to take away anything that helps with pain and refuse to try to do anything to help with my symptoms. I am seriously considering getting a different doctor.
 
Agree, if you really don't need to go to the hospital, then don't. Healing happens faster at home anyways. It's been proven. Chances of you getting even more sick are greater there (whether from the food, or a disease!). 2nd opinions are always good, afterall, it's your health!
 
I was bawling my eyes out at the clinic because I didn't want to go in there. The doctor ignored me and didn't give me a second choice. I didn't want to risk not getting my methadone on time and didn't want to be away from my son and my family. I don't like relinquishing control of my life. This disease takes away any sense of control in your life and I didn't feel like handing the keys to a doctor. He's never felt opioid withdrawals before, and I have and I don't want to feel sicker on top of my Crohn's for anyone.
 
Every doc I've ever met has tried to steer my wife away from pain medications, but for the last 4 years, she's suffered from horrible abdominal pains. So bad in fact that she was seeing just a pain management doctor just for that. Keeps the heating pad on her tummy so much that she has 1st degree burns all over her stomach from the heat. Pain meds are what is keeping it bearable, at least for now. They're never a long term solution, but to help you get by, I think its necessary. We live in the 21st century. The physician's can get over it. Quality of life is #1.
 
My 4th infusion was June 4th and had a colonoscopy on June 24th. Results have been very encouraging. Inflammation by my estimation has gone down by about 50%. Severe inflammation in the terminal ileum has almost completely healed. Inflamed areas in the colon still have a ways to go. First infusion was February 26th so almost 4 months to the day. Next colonoscopy in a year.

Stating the obvious I think that those with very severe Crohn's are at a big disadvantage because this drug takes so long to take affect and they just run out of time. Fortunately, when Cimzia stopped working I was put on a bridge drug (Imuran) to buy some time until Entyvio kicked in. The condition of my Crohn's was not as severe as some others before starting Entyvio.

When Cimzia stopped working we went to injecting every two weeks and then double dosing for six weeks to try to kick it back in to remission. That didn't work. If I had to do it over again once Cimzia stopped working I would have gone on Imuran and started Entyvio immediately before my symptoms deteriorated. I lost almost nine months trying different things where my Crohn's could have gotten much worse not realizing that Entyvio takes so long to start working.
 
DDCleveland said:
My 4th infusion was June 4th and had a colonoscopy on June 24th. Results have been very encouraging. Inflammation by my estimation has gone down by about 50%. Severe inflammation in the terminal ileum has almost completely healed. Inflamed areas in the colon still have a ways to go. First infusion was February 26th so almost 4 months to the day. Next colonoscopy in a year.

Stating the obvious I think that those with very severe Crohn's are at a big disadvantage because this drug takes so long to take affect and they just run out of time. Fortunately, when Cimzia stopped working I was put on a bridge drug (Imuran) to buy some time until Entyvio kicked in. The condition of my Crohn's was not as severe as some others before starting Entyvio.

When Cimzia stopped working we went to injecting every two weeks and then double dosing for six weeks to try to kick it back in to remission. That didn't work. If I had to do it over again once Cimzia stopped working I would have gone on Imuran and started Entyvio immediately before my symptoms deteriorated. I lost almost nine months trying different things where my Crohn's could have gotten much worse not realizing that Entyvio takes so long to start working.
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Glad to hear you're getting some positive results! My wife's 4th infusion was last week. She just had a visit with the colo-rectal surgeon today to schedule a fistula repair surgery. She was feeling quite well yesterday! Hooray! Unfortunately, she is one of those with severe Crohn's disease, she took Imuran about 3-4 years ago, but it caused her body to stop producing white blood cells. She was kept in isolation in a cancer ward for almost 2 weeks because any infection would have had grave consequences! We still can't make the determination if the Entyvio is helping, because while she does feel a bit better from time to time, her frequency of going to the restroom is still about every 1.5-2 hours. The doc says that's way too frequent, especially since she's using Limotil which is supposed to slow her bowels down.

When she has this fistula repaired, the surgeon will give her a temporary loop ileostomy to let the fistula heal (he said about 3-4 months of healing). We're also not sure how this surgery will affect her current recovery process. Thanking god for a good day yesterday though. Those don't seem to happen very often for her :(.
 
Sitting here waiting for the visiting nurse for my first infusion. I'm a little worried. So many incompetent people have trouble with my veins. Humira stopped working after 4 1/2 years, AZA made my liver enzymes go out of sight, Pentasa did nothing, so now Entocort and Entiviyo are getting their chances to make magic. Not expecting miracles, but Sure hope this works!
 
Well, infusion #8 is next week. The last month has been...interesting. This is the first time I've entered those last weeks pre-infusion without also taking Uceris, and it did not go well. At all. The downward slide started between weeks 4-5, and got really bad by last weekend. I'm back on Uceris. This wasn't entirely unexpected (I've noticed that slide before, but it wasn't so pronounced because I was on Uceris!), and my gastro is petitioning my insurance to allow infusions every 6 weeks (he thinks we stand a better chance of having that approved as opposed to every 4 weeks). We'll discuss more when I see him in August (right before my one-year Entyvio anniversary). I really do think this is helping (I had my annual physical a few weeks ago, and 123lbs is the most I have weighed in years!), but it has been very slow, and I don't think the every-eight-weeks dosing is cutting it.

I won't be surprised if we discuss adding an old-school immunosuppressant to the mix (I would prefer Imuran, I've got a long (mostly good) history with that one), as others have done. Especially if my insurance denies our request.
 
peluchde said:
Sitting here waiting for the visiting nurse for my first infusion. I'm a little worried. So many incompetent people have trouble with my veins. Humira stopped working after 4 1/2 years, AZA made my liver enzymes go out of sight, Pentasa did nothing, so now Entocort and Entiviyo are getting their chances to make magic. Not expecting miracles, but Sure hope this works!
Click to expand...
Get a port put in they are awesome. I have had mine for almost a year and love it. It just looks like a little tiny bump in your skin and hurts so much less when they access it than getting a regular IV.
 
I recently received the infusion at a slower rate and it has really helped. What facility does your wife use? Yes, the dehydration can be a bear, I've learned to be a water drinker.
 
Visiting nurse came yesterday and I had my first infusion. So far, so good. I'm feeling fine. Still taking Budesonine since I was told that this drug takes a while to work its magic and hopefully the Budesonine will keep me out of the hospital.
 
First infusion of entyvio was uneventful. No side effect's noticed. Only thing is it took too long, but I think the 1 hour to monitor after infusion is for the first time only. No problem being poked. The nurse liked my big juicy vein's. She said "Ready? Take a deep breath" I said what for? I guess I'm desensitized to needles and tubes in my body after all the years of test's & surgery's. Back in 2 week's, 6 week's, then every 8 week's thereafter.
I really hope this stuff work's.
All the best to all of us.
Gary
 
Gary, I guess we are starting Entyvio at the same time. I, too, had an uneventful first infusion. Wishing remission for you as well as myself!
 
Don't be discouraged!! Takes so very long to feel any results. Didn't notice a difference until 5th infusion and even still not perfect but definitely an improvement from where I was at zero. Did have a huge headache for weeks after and N,D for a week after each infusion. Hoping for positive results for you
 
Thanks Peluchde & Mamabird.
Funny you say that Mama, because today I did wake up with a head ache.
coinsedence or related?
Gary
 
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grayk said:
I received my first Entyvio infusion yesterday. It was easy breezy. No pre meds were required, and the infusion only took about 40 minutes.

I go back in 2 weeks, then back in 4. I have to build up to every 8 weeks. Hopefully I will start to see some improvement.

I am staying on Methotrexate, but get to come off of Cimzia.

I will keep y'all posted on how this works out for me. I would love to hear if any of you have positive results from this new medication.
Click to expand...


I have been on Entyvio for 6 months. I was previously on prednisone for 6 months. Really glad to be off of that because it caused insulin dependent diabetes when i was a diet controlled diabetic. My blood and micus has subsided. I still suffer fatigue, severe back and ab pain sometimes, less frequency from 8 to 5. My doctor explained entyvio can take up to a full year. Hoping things keep getting better. It is my only medication. I have been allergic to all of the other crohn's medications.
 
Hi everyone,

I am 20 y/o, diagnosed with CD at 15 y/o.
I have so far been on budesonide (on and off) and mesalamine for the past 5 years.
Doc wants to take me off the budesonide for good, and after having my 6th colonoscopy approx. 2 weeks ago, he found tons of redness/inflammation/superficial scarring throughout the large intestine.

And the other day, he called me in to discuss the advantages of going on a biologic (he says his top two recommendations are entyvio and humira).

After doing my own research on the internet and such, I find that entyvio sounds much more appealing.

However, after reading through this thread, I'm feeling a little discouraged :/
I am a pre-med student and I fear that the side effects will negatively affect my studies and work (as if the symptoms of CD weren't enough :frown: )

Anywho, I just wanted some advice. For my age and my circumstances (school, etc.), what do you all think about me going on entyvio vs. humira?
Doc wants me to make a decision within the next two weeks and I just need some advice from folks that are currently undergoing treatment.

Thank you in advance :)
 
sunshinestate said:
Hi everyone,

I am 20 y/o, diagnosed with CD at 15 y/o.
I have so far been on budesonide (on and off) and mesalamine for the past 5 years.
Doc wants to take me off the budesonide for good, and after having my 6th colonoscopy approx. 2 weeks ago, he found tons of redness/inflammation/superficial scarring throughout the large intestine.

And the other day, he called me in to discuss the advantages of going on a biologic (he says his top two recommendations are entyvio and humira).

After doing my own research on the internet and such, I find that entyvio sounds much more appealing.

However, after reading through this thread, I'm feeling a little discouraged :/
I am a pre-med student and I fear that the side effects will negatively affect my studies and work (as if the symptoms of CD weren't enough :frown: )

Anywho, I just wanted some advice. For my age and my circumstances (school, etc.), what do you all think about me going on entyvio vs. humira?
Doc wants me to make a decision within the next two weeks and I just need some advice from folks that are currently undergoing treatment.

Thank you in advance :)
Click to expand...

Take humira. Especially if you can't afford to wait anymore time. it takes months after the first dose to work. I am 3 doses in since 4/29 and I have to wait until August 5th to get my 4th dose and October 5th to get my 5th dose. Most people say 4-5 doses is when it actually works. I have had no response with Entyvio and Humira worked wonderfully. Kicks in so much faster.
 
Sunshine,
Humira didn't work for me. Too soon to know if entyvio is any better.
Everyone's different. Gotta keep trying to find out what works best for you.
As far as side effects... They all have potential one's.
Out of control crohn's is a certain detrimental side effect.
My wife seems to think that people who generally feel bad and / or developed side effects, would tend to contribute to this forum more than someone who feels good and has no side effects. I think she may be right. I think that's just human nature. Don't let that effect your decision.
Hope you find relief with whatever course of action you decide.
G
 
Humira stopped working for me after 4-1/2 years. TryingEntyvio now, but I've only had one infusion, so I can't tell you anything about effectiveness. Hope this one can work for awhile longer. Humira is so much more convenient. No need to have it infused. I'd go with that. Good luck to you!
 
Hi! Everyone has such different reactions to the type of drugs, it's so bizarre! Humira caused me to have a tubo ovarian absess and therefore a drain had to be placed. Not fun. But I feel that you should try that first as it may have faster results than entyvio. Best to you!!
 
My gastro doc does not like Humira, and the infusion center I used to go to (they only give Remicade) had several patients who tried Humira and stopped. The pain of giving yourself daily injections became too much. Yes, entyvio does take longer to kick in, but it is worth the wait.
 
doglover1 said:
My gastro doc does not like Humira, and the infusion center I used to go to (they only give Remicade) had several patients who tried Humira and stopped. The pain of giving yourself daily injections became too much. Yes, entyvio does take longer to kick in, but it is worth the wait.
Click to expand...

Humira is NOT DAILY. It is every other week.
 
Good call Seahart.
No doctors on this thread.
Listen to yours people.
All the best,
G
 
Last edited:
doglover1 said:
I recently received the infusion at a slower rate and it has really helped. What facility does your wife use? Yes, the dehydration can be a bear, I've learned to be a water drinker.
Click to expand...

We use the Austin Infusion Center, close to Seton Downtown I think?
 
Has anyone had luck with Entyvio? I have tried all biologics without any luck, end up with serum sickness, terrible joint pain, fatigue. I have fistulizing Crohn's disease , no parts of my colon removed yet and trying to keep it that way. I have had fistula repair by my rectum and suffer from a not so tight sphincter muscle which makes it difficult when having a flare or doing a bowel prep. Scared to try another biologic as I have had no luck with them so far.
 
pwind… My son has been on most of the biologics also, Humira, Remicade, Cimzia, Double doses of Cimzia, and none of them worked for very long or not at all... and now is on Entyvio since last November. Unfortunately…for him….it is not working either and since they have increased the frequency to once a month..his side effects are worse…he has severe back pain and has to be on meds and has had two UTI's in the last two months…both side effects of Entyvio. Unfortunately for him the biologics just don't work…so after a lot of research we have decided to start him on the Anti Map Therapy and we are very hopeful! I will post his progress.
 
My son is going for his second infusion today. No side effects or results after the first and trying to stay positive!
 
Just added 6mp to entyvio regimen. Have had 5 infusions so far. Definitely an improvement, just doesn't last the full 8 weeks. Best to everyone!
 
Hi Mama Bird,

I've been on 6MP and am 3 infusions in. Saw the CRS yesterday. I'm still having pretty severe right lower quadrant pain & rectal pain. He says inflammation is still pretty bad and am going for CT today. Good luck to you and I hope the 6MP helps.
 
I'm spiralling downward. Extreme right lower quadrant pain, rectal pain. Nothing on CT other than non-specific fluid filled loops in small bowel. They stopped 6mp and put me on all liquids for 24 hours. No change. Blood normal, finally able to provide stool sample today. They are checking for C-Diff. Up to this time, Entyvio seemed to be helping. I'm following up with GI tomorrow. He was on the verge of hospitalising me on Friday. I'm venting and looking for advice. Questions to ask? I don't know anymore.
 
It's so frustrating. I feel for you. I had c diff last year that they happened to find by chance during a colonoscopy biopsy. Insane. I hope you find the answer to your pain soon. My blood work was normal and I still had c diff positive. People with crohns's and UC can get spontaneous CDiff! Awesome. Sending my best
 
Hello everyone
I am 27 year old crohn's disease patient, had it since i was 13
My history: asacol, 6mp, remicade (bad reaction with horrible joint pain), humira worked for 7 years and has stopped working for me as of 2014 and im currently having the worst flare of my life
First infusion of entyvio october 2014, i wound up having bowel resection on my terminal ileum in may 2015 because of symptoms not improving and too scarred to treat
Was doing ok until a couple of weeks ago another flare occured in my sigmoid which no infected intestine was removed because they thought it could be healed with medication. I still haven't stopped Entyvio but feel it isn't working, (doctor also has me on prednisone 30 mg and weaning off weekly)
I see my surgeon and GI this thursday, maybe try Cimzia? Or wait for full year for Entyvio? Very tough decision
 
If you were to try Cimzia, I believe your doctor would have tried that before going to Entyvio. I believe Entyvio is a last line of defense right now as far as options go. But don't give up hope, there are several pharmaceutical corporations right now working on different formularies, Takeda Pharmaceuticals (maker of Entyvio) from what I read, is even working on new meds for Crohn's right now. Don't give up hope!
 

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