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Entyvio (Vedolizumab) Support Group

Thanks for letting me know.


And I forgot to ask if you have any of the more common post-infusion side-effects such as extreme fatigue.
 
No side effects so far. Other than my Crohn's being better there have been no other effects and I'm a lot less fatigued than I was on remicade.
 
I did feel better after my first infusion but it was after the fourth that I really felt a big difference. Got my fifth coming up in a week and a half so expecting to feel even been better after that. My calprotectin has been excellent and since it takes 6 months for E to reach full effectiveness then I'm hopefully on my way to being very well afrer the next few infusions.
Hi jonny84, thats great to hear.
I’m curious about your calprotectin, mine went better but still around 200, how is yours? Lower than 100?
 
Hi jonny84, thats great to hear.
I’m curious about your calprotectin, mine went better but still around 200, how is yours? Lower than 100?
Yeah - mine was 20 on the last test, which is the lowest its ever been. Can't get better than that really...
 
I just read a few dozen side-effects to Entyvio posts on this thread and I'm listing my own symptoms in hopes that it will give others some relief as far as wondering what the hell is going on:


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

-Deep fatigue, mainly in the afternoon.

-Some brain fog

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


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

-Mild back pain

-Some chills at night

-General loss of appetite


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

CBD oil does help with the cramps.

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

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

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

I have bad news from my last mri. The situation worsened in my ileum with stenosis tracts and possible fistulas or risks to develop it.
They made me stop entyvio and highly recommend a resection surgery within 3 months.

I’m a bit stunned, as i though I was going ok... this disease is such stupid...
 
I just spoke with Entyvio Connect today ... and it's a total waste of time as far as getting help is concerned. First they try to downplay side effects (I was reporting the chronic fatigue, which is debilitating for me.). First they say "some people have various side effects". When I said that on this forum there were numerous reports of fatigue, the person I spoke with counted where on their list of side effects "fatigue" was listed. It was number 6. I mentioned that might have been because everyone experiencing the symptom didn't necessarily report it. (Which is why it's so important to call in and report the symptom). Then they downplay the impact on quality of life. They keep telling you to speak with your doctor (as if we wouldn't do that on our own). I asked if Takeda had any experience with side effects from weaning patients off Entyvio. Whoever I spoke to said they didn't give medical advice. I asked to be transferred. The next person had a similar reaction -- they did not tell physicians how to wean a patient off Entyvio and on to another drug. I asked if that was because they didn't set up that area to study during their trials. I actually had to ask this several time until I finally got the answer that weaning a patient off Entyvio was not included in clinical trials. So they don't know whether to wean a patient off (like what is done with prednisone) or just stopping cold turkey. They said it was up to the doctor's discretion. I asked how the doctor is supposed to use discretion if they don't have any information to guide them. It didn't get any better. It is important to call the Entyvio Connect hotline 855 489 6814 to report symptoms and side effects. Just don't expect anything support, information or help from whoever you speak with.
 
I just spoke with Entyvio Connect today ... and it's a total waste of time as far as getting help is concerned. First they try to downplay side effects (I was reporting the chronic fatigue, which is debilitating for me.). First they say "some people have various side effects". When I said that on this forum there were numerous reports of fatigue, the person I spoke with counted where on their list of side effects "fatigue" was listed. It was number 6. I mentioned that might have been because everyone experiencing the symptom didn't necessarily report it. (Which is why it's so important to call in and report the symptom). Then they downplay the impact on quality of life. They keep telling you to speak with your doctor (as if we wouldn't do that on our own). I asked if Takeda had any experience with side effects from weaning patients off Entyvio. Whoever I spoke to said they didn't give medical advice. I asked to be transferred. The next person had a similar reaction -- they did not tell physicians how to wean a patient off Entyvio and on to another drug. I asked if that was because they didn't set up that area to study during their trials. I actually had to ask this several time until I finally got the answer that weaning a patient off Entyvio was not included in clinical trials. So they don't know whether to wean a patient off (like what is done with prednisone) or just stopping cold turkey. They said it was up to the doctor's discretion. I asked how the doctor is supposed to use discretion if they don't have any information to guide them. It didn't get any better. It is important to call the Entyvio Connect hotline 855 489 6814 to report symptoms and side effects. Just don't expect anything support, information or help from whoever you speak with.
Thanks for confirming the chronic fatigue as one of the worse side-effects from the Entyvio. I just had my second infusion a week ago, between the brain fog and having very low energy, there IS a reduction in quality of life.

I have gone through a lot posts on the side-effects of Entyvio, and I think that some people said that their side-effects disappeared over time, but this is no guarantee as everyone is different.

I sometimes take Herb Pharm's Rosemary extract sublingually and it helps clear my mind.

A little over three-years ago, I stopped my Remicade infusion cold turkey (with the protestations from my GI doctor)-I should have stayed on Remicade, as I had zero side-effects from it. I had been on the Remicade for nearly two-years and had no withdrawal symptoms, but of course you want to check with your doctor and of course there's the risk that if you were not to officially stop your therapy, you might be held liable for the cost from your insurance (I'm guessing).

I went off of Remicade because I foolishly thought that my new Vegan diet was the reason why my Crohn's symptoms were in remission.

Hope that this was of some help.
 
Location
San Diego
So they don't know whether to wean a patient off (like what is done with prednisone) or just stopping cold turkey. They said it was up to the doctor's discretion. .
I'm not a doctor, but I doubt there is a need to wean off of Entyvio as there is with prednisone. Prednisone is a powerful steroid that your disease can become "dependent" on over time. Among other side effects, the adrenal glands shuts down producing any of your normal cortisol due to the excess of the chemically-similar prednisone. You need to wean off slowly to allow your adrenal gland to wake back up and resume its normal production.

None of that applies to Entyvio or any of the other biologics. There is no natural supply of those drugs in the first place that needs to be restarted.

Probably the bigger issue with stopping any biologic revolves around how long it takes for the replacement medicine to kick in. If they are replacing the Entyvio with something that takes a long time to start working then the doc may wish to keep the Entyvio going for a while in order to avoid inducing a flare due to having nothing keeping your disease down while the new drug gets going. But as the unhelpful Takeda person said, that is up to the doctor's discretion.

Also, I wouldn't expect a lot from these help lines for any drug or drug company in general, not just Takeda. That's because what can be said to the public by drug companies is strictly regulated by the FDA. They can't wander very far off their approved script - a script that is in turn dictated by the drug's FDA-approved labeling. Otherwise they could be charged with promoting "off label" use of the drug or accused of trying to practice medicine. And both of those are the exclusive purview of doctors, not drug companies.
 
Hi guys, sorry I don't know your story in details, but don't you think your symptoms could be due to the disease itself (especially fatigues, loss of apetite, higher frequency of bm)? It seems to be the symptoms I had when my disease was not under control, and if you have been on entyvio for only few months it could take few more times to be really effective.


I'm not trying to defend entyvio, unfortunately it failed to me .. and maybe it's not effective in your case neither, but if I were you I'd look to your inflammation markers (CRP; calprotectin) to try understand if you have an active disease or not and in case discuss with your doctor possible discontinuation of entyvio or give it few more times before changing medication.


Hope you'll feel better soon
 
Hi. I'm new to the forum and to Entyvio (just finished my loading doses on 4/17). Has anyone experienced elevated liver enzymes from taking entyvio?
I had follow up blood work on 4/24 and it came back with elevated liver enzymes (ALT SGPT 81, AST SGOT 58 and alk phos 157). My GI suspects doxycycline (on for 2 weeks ending 4/17) and/or prophylactic valacyclovir (for cold sores) to be the cause. It may well be, however, I've been on both meds before and this is the first time it's happened.
 
Hello everyone,
I guess my question is for females taking Entyvio. I just finished my last loading dose last week and since starting the infusions I haven't gotten my period. (and no I am not pregnant as my fiancé has been deployed since January). My GI Dr said he thinks it is unlikely that the drug is causing this because it is gut specific, however when I called the company they said that they haven't done any fertility studies on the drug and were unable to say one way or another. I recently got bloodwork to check my hormone levels and nothing looks abnormal, however I'm starting to get nervous given that I have always been very regular and am now going on 3 months without a period. (and no chance menopause as I am 26)
Just wondering if anyone else had experienced this as a result of the infusions.
Thank you!
 
I did a Google search on "Entyvio and menstrual cycle) and several web sites came up with "irregular, missed, or painful menstrual periods" in the list of Entyvio side effects. Hope this helps.
 
Hi everyone. I'm starting entyvio on Friday and could do with some encouraging stories if possible. I have aggressive crohns which struck out of the blue two years ago and nearly took me out with a sneaky perforated intestine/ sepsis sucker punch. Thank God for the locum GP who realised there was something wrong and I wasn't just being postnatal. Since then prednisone (did nothing), budesonide (helped for a few months then stopped working), azathioprine (couldn't tolerate side effects), 6mp (same side effects), remicade biosimilar (put up with side effects til third dose, then serious side effects I.e. chest pain/ heart palpitations/ pressure in head/ trouble focussing vision to the point I was wondering if I was going to keel over). And then found out farcical calproctin still off the charts anyway. So we are going for entyvio as has fewer side effects. I would just like a bit of hope to hang onto if anyone has good things to say.
 
HI,
I went through very similar steps that you outlined. My Remicade caused so many skin cancers that I couldn't stop it quick enough. My 6MP destroyed my white count. I am starting year 2.5 on Entyvio and have haD a virtual total remission. It really works! NO side effects at all.... still can't eat ruffage like broc/caul/cabbage/etc. They cause a wipeout. But other food seem to be well tolerated. AGAIN, NO NEG COMMENTS, REALLY DOES WORK!


THE BEST OF LUCK......
 
Hello everyone,

I guess my question is for females taking Entyvio. I just finished my last loading dose last week and since starting the infusions I haven't gotten my period. (and no I am not pregnant as my fiancé has been deployed since January). My GI Dr said he thinks it is unlikely that the drug is causing this because it is gut specific, however when I called the company they said that they haven't done any fertility studies on the drug and were unable to say one way or another. I recently got bloodwork to check my hormone levels and nothing looks abnormal, however I'm starting to get nervous given that I have always been very regular and am now going on 3 months without a period. (and no chance menopause as I am 26)

Just wondering if anyone else had experienced this as a result of the infusions.

Thank you!


I’ve been on Entyvio for 4 years now and haven’t had it affect my cycle. Have you recently lost a lot of weight or are you on prednisone? How long have you been flaring? I didn’t have a period for 3 years due to all the stress from flaring.

Has your doctor tried a progesterone challenge where you take progesterone for a few days and then see if you have a withdrawal bleed?

Do you keep track of your cycles noting ovulation and luteal phase? The book “Taking Charge of your Fertilty” by Toni Weschler is really helpful. It may be hard now though since you’ve missed some cycles, but for the future it’s really helpful to track everything to know what’s going on with your cycle and how stress affects it.
 
Hi everyone. I'm starting entyvio on Friday and could do with some encouraging stories if possible. I have aggressive crohns which struck out of the blue two years ago and nearly took me out with a sneaky perforated intestine/ sepsis sucker punch. Thank God for the locum GP who realised there was something wrong and I wasn't just being postnatal. Since then prednisone (did nothing), budesonide (helped for a few months then stopped working), azathioprine (couldn't tolerate side effects), 6mp (same side effects), remicade biosimilar (put up with side effects til third dose, then serious side effects I.e. chest pain/ heart palpitations/ pressure in head/ trouble focussing vision to the point I was wondering if I was going to keel over). And then found out farcical calproctin still off the charts anyway. So we are going for entyvio as has fewer side effects. I would just like a bit of hope to hang onto if anyone has good things to say.


I’m sorry you’ve been through so many meds with lots of side effects. Entyvio is the only thing that has worked long term for my gut. I have had no side effects. The only drawback for me is that since it’s gut specific it doesn’t help my arthritis and iritis, and I’m still trying to find something to help those. Just try and be patient since it does take a while to kick in. I didn’t notice improvement until 3-4 months, and it’s gradual. By 7-8 months though I was in remission. I hope it works well for you.
 
Thanks for your positive stories, much appreciated. Had my first infusion today, went smoothly and been feeling okay this afternoon so hopefully this is the start of things getting better.

Thank you again for taking the time, it helped me feel calmer going in this morning.

Best wishes
Delta hippo
 
I'm about to switch from Humira to Entyvio because of the terrible psoriasis, sores, etc. I've developed since being on Humira (5-1/2 years). Small patches on my arms, legs and back were one thing, but now i'm getting splotches, sores and rashes on my hands and face. All along some sores anywhere and everywhere would even get infected.

Also in that time I've gradually become intolerant of ice cream, coffee and now chocolate. This comes after thirty years of Crohn's with no food problems at all.

Are these problems with coffee (especially!!) symptomatic of Crohn's, or side effects of Humira? Might I look forward to improvements on Entyvio? As mentioned in these pages, my GI tells me Entyvio is much more targeted, with less systemic impact.
 
Hi guys, sorry I don't know your story in details, but don't you think your symptoms could be due to the disease itself (especially fatigues, loss of apetite, higher frequency of bm)? It seems to be the symptoms I had when my disease was not under control, and if you have been on entyvio for only few months it could take few more times to be really effective.


I'm not trying to defend entyvio, unfortunately it failed to me .. and maybe it's not effective in your case neither, but if I were you I'd look to your inflammation markers (CRP; calprotectin) to try understand if you have an active disease or not and in case discuss with your doctor possible discontinuation of entyvio or give it few more times before changing medication.


Hope you'll feel better soon
Thank you for your insight.

I have gotten the bloating, abdominal cramps and pain, body temperature fluctuations and near debilitating fatigue the following week or so after my Entyvio infusions.

I just had my third loading dose a few days ago and although I know that it takes a while to kick in, the Entyvio may be doing more harm than good.
 
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