Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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D.Mom said:
I recently started Entyvio about 5-6 weeks ago. This has been my first infusion type medication I have ever been on. Haven't gone for a scope yet to check on the inflammation, but so far results seem to be decent. Blood levels slowly rising and BM's are becoming less frequent. Unfortunately, I have gotten this terrible cough and gag sensation (after so much coughing) that started around the same time as my infusions as well as becoming more tired/out of energy. I will be continuing the infusions for now, but those side effects have not gotten better.

I was wondering if anyone else has experienced this coughing? I've tried anti-histamines, inhalers, prednisone, cough syrup, air purifiers, nasal spray, and nothing seems to be working to calm it or get rid of it.
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ive been having a similar gagging ordeal since starting entyvio. im not sure how long after i started it begun but it feels like it happens most when i bend at my waist or something like that i gag like im gona throw up but never do. havent figured anything out on it though
 
tzvia said:
If you are switching from Humira to a Entyvio, can you switch right away, or is there some kind of waiting period so that the Humira can get out of your system? I'm hoping to be able to switch over quickly, if I can work it out with insurance
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I was told by my gastro at tufts medical in Boston that he would need to keep me on Humira for a while if I ever decide to go on entyvio. He said the entyvio takes a little while to kick in and start working to it would be best to stay on Humira until that happens. Hope that made sense and helped. Good luck and I hope you do well on it!
 
I am thinking I need to go for a second opinion. I'm on Entyvio & 6MP. I'm told everything is fine, and then I abscess. I'm just so frustrated.
 
Hi, I am not sure if this is where i should be asking questions but I am in need of some advice. I have been on Entyvio since around 10/2014, so far it has been great. But i have severe anal stenosis which sometimes causes obstructions that require hospitalization to decompress with a wonderful NG tube. I also have 3 fistulas that sometimes form abscess. Anyway, my GI wants to combine Entyvio with 6mp, and since Entyvio is so new he does not know of any studies or patients that have tried this combo. If anyone has i would love to hear your opinion on if you think it has helped. The main point of trying the 6mp would be to reduce the inflammation from the stenosis and heal the fistulas. Otherwise they are going to have to remove my rectum, and i'm only 24 so i don't know what i would do if that happens. Thanks Cameron.
 
Definitely try the 6 mp and even go to entyvio every four weeks.
I am entyvio monthly and MTX which is somewhat similar to 6 mp works faster though.
They both suppress the immune response and that makes entyvios job easier as it has less to deal with. Think of it as fighting a battle as that's what's actually going on inside. You need to bring to bear all the weapons you can and try avoid surgery. BTW docs bring up surgery as the way to go parlay to feel you out and soften you up for it. Cameron tell them no surgery until you have exhausted all other options.
Unfortunately it doesn't heal crohns so 50/50 you will be dealing with new symptoms 5years later.
There are others doing 6 mp with entyvio on this forum.
 
Robrich- I started Entyvio last year and have been doing well at 8 week intervals. I have been on 6mp and MTX in the past but that was when i was on cimzia and humira. (not at the same time) As far as the surgery, i do know that is the very last option, unfortunately i have had 7 in of colon removed, as well as my gallbladder. How long have you been on 6mp with entyvio? What new symptoms were you talking about? Maybe side effects from the 6mp?? Thanks
 
I was referring to the fact that crohns recurs in a new place for around 50% of those who have surgery to remove the diseased section after 5 years.
I had a resection many years ago. Lost several feet of colon. No more cramping after that. But the disease came back rather quickly in the rectum with fistulas. I've been dealing with that for 30 years. So I should've cut that out?
Then what wait until it comes to my small bowel?
I've been on Methotrexate with entyvio for a year and monthly entyvio last 4 mos.
I couldn't tolerate 6 mp, my liver shut down.
Combo therapy with entyvio is the same idea as with humira etc. no studies yet but it doesn't matter. So what if it helps 20%, or 50% of the time. It's still worth a try considering what you've got to lose.
 
Well i have my rectum to lose. I do NOT want to loose my rectum and get a bag. I am just concerned about side effects with 6mp and the fact that there isn't much info on it combined with entyvio. Etyvio keeps almost all my symptoms of crohns away, besides the anal stenosis, fistulas, and fissures. So my only goal for 6mp would be to heal or just reduce the stenosis so i stop getting obstructions when i'm constipated. Most likely in 10 or 20 years i'm probably going to lose my rectum, i'm just not ready now.
 
some of you complain about abscesses. what do you mean? I know they are sores, but where do they occur and how do you know they are assesses? Thanks.
 
Hi Gail,
An abscess is a collection of puss. I develop them beside my anus. They can occur anywhere in your GI system or in your body, I believe.

As far as a peri-anal abscess, I get pain and swelling around the anus. Sometimes you will see blood or mucous. If you have CD, and develop any of these symptoms, you should see your doctor.
 
Gail- If you do get them, you will know. The main treatment for abscess's is to be lanced in an ER. Lancing is where the cut it open to allow for drainage. They give you a shot of lidocaine near the abscess and when it's a PA abscess, believe me the shot HURTS. Count you blessings. Also just a tip, to save time and money if you absolutely know it is just an abscess, you don't have to go to the real hospital, a 24hr stand alone ER clinic will work fine. They quickly see you and get you out, no overnight stays. But if you think it is more than that and might require hospitalization then do go to the real hospital.
 
Several months ago I had reported some improvements with Entyvio. Now after my 6 infusions I have not seen any improvements at all. The office that I go has 4 GIs with 15 Entyvio patients, 10 have shown improvements, 5 (like me) no improvements.

Will go through my authorized 8 infusions but at this point we may go with Stelara off-label use which is a pain to get authorizations to use. Stelara is even more expensive than Entyvio.
 
lgpcarter said:
I don't have any abscesses at the moment, but have in the past. I have several pesky fistulas and perianal disease and it does seem to be better. Best in years, actually. I am still on Cipro and Flagyl, though, and reluctant to go off yet.

I will get my 4th infusion of Entyvio on November 18th and will update after that.
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Many Thanks. The 4th infusion went well, with minimal side effects. Been treating one persistent abscess with a round of Ceftin, now on 500mg Cipro and seeing some response. The other three abscesses have resolved since I first posted. Best wishes for your 4th.
 
I had my 1st Entyvio infusion yesterday and it went fine, except today I am quite nauseous.
I know that is listed as a side effect. Anyone know how long it will last? I hope it is not a permanent side effect. I desperately need to gain weight and nausea is not what I need. Thanks for answering.
 
I haven't been getting my email updates, so I lost track of this thread. I've been on Entyvio since May and have had 5 infusions so far. I'm wondering, has anyone else experienced constipation with this? I've never had constipation before, and the only thing I can think could be causing it would be the Entyvio. The bonus (being sarcastic) is that with the constipation I have horrific bloating and gas. I feel like I should quarantine myself from the rest of the world. The strange thing is that once I do go, it's kind of like diarrhea. I don't know what to think. I'm not sure if I should make an appointment with my GI, because I don't even know if I have any other options. I guess I shouldn't be complaining really since otherwise I feel pretty good.

Entyvio hasn't helped with my abscesses and fistula. From what I've read here I guess I shouldn't expect it to.

ctaylor-91,
I'm not on 6 mp, but I'm on Imuran with Entyvio. I was concerned about side effects, but I spent so long being sick, I'm just happy to feel pretty normal right now, so I'm not really worried about it at this point. This is quite a change from someone who endured a year long flare an ended up basically immobile due to arthritis and inflammation from Crohn's because I was too afraid to take Imuran due to possible side effects. I'm OK with it now, but I know it's a big decision. It seems like quite a few people are on other immune suppressors in conjunction with Entyvio. Hope you can make a decision you're comfortable with.
 
Octobergirl, you must tell your GI. I've learned the hard way to be aggressive with my doctor and his office staff. Otherwise when things are really bad you get blamed for not telling them all along. Also, maybe you can get help. I know there is a medicine given Crohn's patients with constipation which I can't recall but I see the pamphlet in my drs office. Of course it has side effects...
 
Does anyone have or know how to access the reports that taking Entyvio/Vedolizimab every 4 weeks rather than every 8 weeks is beneficial? The Dr said this is the case but I can't find the evidence. I would be most grateful and I hope could be useful for everyone to know about as well.
 
No sure about where to access the info but my daughters doctor said the same thing he just got back from a conference on it and is moving her to every four weeks.
 
Gail Jothen said:
I had my 1st Entyvio infusion yesterday and it went fine, except today I am quite nauseous.
I know that is listed as a side effect. Anyone know how long it will last? I hope it is not a permanent side effect. I desperately need to gain weight and nausea is not what I need. Thanks for answering.
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Had my 1st two weeks ago. I had some pretty strong nausea. Called my gi after 5 days she prescribed Zofran it really seemed to help.
 
Hi octobergirl! The same thing happened to me with constipation and gas after my fifth infusion! I felt like I was going to explode then the diarrhea started again . My GI sent me to see a colorectal Doctor that specializes in crohns/uc who had me taking benefiber and colace. I did it for about two months but then it went from diarrhea to mushy paste that's leaking out because the perianal region is still inflamed. I use calmoseptine which does help the pain there but it's messy. Onnovember 30, I will have been on entyvio for a year and I honestly don't know what to do. Feeling very lost and disgusting. Hoping some of you are finding relief !!!
 
I've just had my 4th dose of Entyvio. After the 3rd, horrible headache, backache and rash, I was afraid to take the 4th. So far I haven't experienced any side effects. Has anyone had side effects with the 4th infusion and what should I expect? I'm the only one in my area that's receiving this so there isn't anyone that I can talk to about it. Although my diarrhea is down to 10-15 times a day I'm still no where near what I would call remission or even an OK place. I keep hearing people talk about the 14 week point. I just hit it and am hoping for some relieve. Would like to get back to being me, not me with a disease.
 
Nausea after my first infusion of Entyvio lasted only 1 day. I will have my 2nd infusion in 3 days, will report any unpleasant side effects. We all have different bodies and side effects surely are not the same for each, or each time. Frustrating reality.
 
Hi

I had my second infusion of Entyvio yesterday. I had an allergic reaction by way of numbness starting in lips then spreading to tongue and throat. I have had allergic reactions to other meds in the past so I ended up in ER but everything settled and I was sent home after a few hours. I think it was a relatively mild reaction and I actually contributed to the reaction adversely because I panicked. I think that's when I found myself struggling for breath. I am not usually prone to panic but when you've survived one anaphalactic shock a feeling of constriction in your throat is too big of flash back!

Anyway, I digress.

I would like to hear from anyone else experiencing this numbness.

I've woken up this morning with numbness in my hands and lowers arms, feet and lower shins. I know I need to report this to my doctors but I am reluctant to speak with them u til I have some feedback. I am running out of treatment options and really need to stick with this treatment if I can. My docs will pull the plug as soon as I report the spread of the numbness. They won't want me to take the risk. I need to take the risk because I am worn out and nothing oral is helping me. The reaction I had to Remicade almost killed me, cimzia and Humira both gave me drug induced lupus. The myriad of oral meds I've taken over the past 22yrs mostly cause debilitating migraine, persistent nausea and increased visits to the little library!

I've travelled the holistic path and have learned that I do best with a combination of both that and conventional medicine. I eat grain free, processed free and practically dairy free.

In short I am a veteran chronie (many surgeries, abscess, fistulas, tried just about every med combo, diet etc) who would really love to get feedback from anyone experiencing numbness so that I have some info to give when I discuss this with my docs and put my case forward for continuing with at least a couple more infusions. When I was browsing earlier I saw a couple of very brief posts referring to numbness but I've just joined this forum and cannot find my way back to those posts.

Sorry it's long winded and thanks in advance for any feedback regarding the numbness (negative or positive).

The irony of having bad guts:stinks: is that it heightens the sense of smell!
 
Piccdee, since I started Remicade 4/21/2014, I developed numbness in my left fingers. I went to hand dr. but steroid shot and large arm mold worn at night did not help. I have been off Remicade since 9/11 due to hives reaction, and have started Entyvio. have been on Endecort for 1 1/2 years. Also on tramadol 2 years, but quit as I thought maybe the tradmadol was causing the numbness. And when I walk barefoot I feel as if I am walking on blisters, no pain, just fullness. I am going back to the hand dr. to complain. But who knows what is causing the numbness. I eat mostly FODMAP, non gluten, non dairy. Lost 40 pounds but have gained 5 pounds the past month which I badly need. Sorry I'm not more help. But the numbness is strange.
 
Thanks for your feedback Gail. I've never had the numbness with any of the previous infused/injected treatments. This is a new one. I've been doing some research into Entyvio and have discovered that whilst rare it is definitely a side effect that some patients have experienced. Encouraging for me simply because I can rule it out as allergic reaction. Anyway, numbness eased up a lot by second day after infusion so I will continue as planned and have my third infusion in about 10days.
 
Just had my 4th infusion on Wednesday. I'm tired and cold all the time. Diarrhea 5-6 times a day and terrible abdominal pain. Spending my time with my heating pad and waiting for this to kick in.
 
peluchde said:
Just had my 4th infusion on Wednesday. I'm tired and cold all the time. Diarrhea 5-6 times a day and terrible abdominal pain. Spending my time with my heating pad and waiting for this to kick in.
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I just had my 4th infusion last Tuesday. I took a couple Benadryl and some Tylenol to help avoid the terrible side effects I had from my 3rd infusion. With the pre and post meds, heading pad on my stomach, and about 14 hours of sleep, I had a relatively easy infusion this time. I hope they only get better. I can see small improvements with my Crohn's. Baby steps at first, I guess. I'm hoping things start improving for you!
 
Hello! Thinking about not doing infusion number 10, scheduled for two weeks from now. Feel feverish and the diarrhea is out of control. Hoping it's not cdiff (again). Maybe need prednisone again!!! Felt like the entyvio was working for a bit and it just stopped all of a sudden. Hoping some of you are feeling better out there!!
 
Hi Mamabird, they are taking me off of Entyvio and moving me to Remicade. New GI says I have "chronic anal fistulae non-responsive to medical treatment". So I guess I get kicked out of this group! I'll miss y'all.
 
Pixcdee
Did had numbness with remicade
Plus two allergic reactions
A brain MRI was required for the numbness since anti tnf can cause issues of the CNS
Not something to mess with
Once ds brain MRI was cleared he was permitted to start humira
 
So sorry GABoy!! I did remicade and had an anaphylactic reaction! I wish you well and hope you find relief. So painful. My best to all
 
Hi All.
At times the news seems to be better on this thread, but not lately. So sorry to hear allot of negative reactions to entyvio lately. Except for mild headaches once in a while, I feel better than Ive felt in years. Is it the entyvio? or just a natural remmision that might have happened anyway? That's the big question. I wish it worked for all of us.
Wishing all good health, a good night and a better tomorrow. :)
 
I have had restless leg syndrome for 57 years (I am 70). The past 2 months it has gotten really bad. It can't be the Entyvio, as I've done it only 2times. I was on Remicade and it did not work so quit it 9/11. I do take Entocort and clonazapan. Anyone else have problems with RLS please?
 
Has anyone gone thru the Entyvio Connect program to get help with the cost of the Entyvio? My doctors nurse just sent me paperwork to complete and it looks like if I qualify I won't have to pay anymore than $50.00 per 8 week infusion.
 
Grandma McB said:
Has anyone gone thru the Entyvio Connect program to get help with the cost of the Entyvio? My doctors nurse just sent me paperwork to complete and it looks like if I qualify I won't have to pay anymore than $50.00 per 8 week infusion.
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I joined the Entiviyo Connect. Yes, it's true that you will only pay that. I had previously done the same thing with Abbott Labs when I was on Humira and that was only $5.00.
 
Hi everyone! I just recently had my 2nd infusion on Friday (nov 20) of Entyvio. Deff had and still have the tired side effect but the PAIN AND DIARRHEA! The pain is the worst... Anyone know when it will stop?
This is kind of my last option bc I've been on remicade and humira and I'm just worried! I need this to work but the pain I'm in ... I'm even taking 2x 7.5/325 Vicodin every 4 hrs and that's barely working!
Any tips? I'm at my wits end here.
 
Misstrishx: call your doctor! there are other meds that sometimes have to be given with the boilogics, some with an m, like metratrex or something like that. I am on Budsonide with my Entivio as Enyvio sometimes takes months to really kick in. And I know the pain. I have had it for 6 years, 4 years undiagnosed; they even sent me to psychiatric classes. Imagine. Put a heating pad on the gut. Try Peptobismo and tylenol. Ask for tramadol although that sometimes does nothing too. My pain was so bad and so long I would have been happy to die.
 
Gail Jothen said:
Misstrishx: call your doctor! there are other meds that sometimes have to be given with the boilogics, some with an m, like metratrex or something like that. I am on Budsonide with my Entivio as Enyvio sometimes takes months to really kick in. And I know the pain. I have had it for 6 years, 4 years undiagnosed; they even sent me to psychiatric classes. Imagine. Put a heating pad on the gut. Try Peptobismo and tylenol. Ask for tramadol although that sometimes does nothing too. My pain was so bad and so long I would have been happy to die.
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My doctor wants to see how Entyvio works at least for the first 3 infusions. I just started it and I've been off of meds since July (wel tried humira for a month but that put me in the hospital bc I was producing so much saliva tht I was not holding anything down not even tea!) yeah I'm on Vicodin... Actually found out I was allergic to tramadol in the hospital when they gave it to me before the Vicodin! Deff having my sister get my a heating pad at target tomorrow!! <3 and yeah I've been in pain for 2.5 years still not in remission. It's been a freaking battle let me tell you! Remicade helped but not in remission, humira put me in the hospital I am really praying Entyvio will work for me bc I'm just fed up like
Most of us are! And I've had those feelings too! I really hope it doesn't take months :(
 
It does take months to work and it isn't as strong a drug as Remicade. So it may not be enough for you as Remicade wasn't enough.
I was on 40 mg pred. when I started entyvio. Also started methotrexate, took awhile but eventually lowered pred to 10 mg. had to increase entyvio to 4week intervals. still need the MTX.
Highly suggest you add steroids and immune suppressant like MTX or 6mp.
Beats what you are going through. You can't cntinue to take that much Vicodin. You will build up a tolerance than what?
Good luck
 
Right, I agree with Robrich, Misstrishx. Only 2 infusions of Entyvio is not enough to give you any relief. And methotrexate is the drug I could not spell, but will probably have to take it when I go off the Budesonide. I am doing quite well now with Budesonide and just starting Entyvio...which probably is not doing much yet. BUT I keep getting sinus infections which is mentioned as prevalent with Crohn's drugs. And the antibiotics are awful on my body...and give me depression. So I have to work at being thankful this Thanksgiving!
 
After 4 years failed Humira, after 6 Entyvio infusions hardly any progress. Considering Stelara but need to go to a special Crohns researcher to get his recommendation for Stelara, see do a google on Stelara UNITI-2 crohns study


As I reported in the Stelara thread, I was in a clinical trial for Stelara in 2006, had 8 injections in 3 months, stopped Crohns in its tracks, then Centacor marketed it as a psoriasis drug. Trying now to get on off-label use for Crohns. The problem that I hear from the ones that went to Stelara is that insurance company authorizes, beyond the loading dose, 4 shots a year, the same dosage as psoriasis. I don't think that will be enough for Crohns, one injection every three months is just not enough.

I am going to do everything I can to get higher dose since I have run out of options. Will see this doctor in December 18 and will report what happens.
 
Have had 2 entivio infusions but don't think they are helping yet, still take 3 Budesonides daily which do help since I started taking them with food. Without food they hurt my gut.
Have a few body aches, is that the entyvio? And I get a lot of sinus infections. Anyone else respond with sinus problems?
 
Gail Jothen said:
Have had 2 entivio infusions but don't think they are helping yet, still take 3 Budesonides daily which do help since I started taking them with food. Without food they hurt my gut.
Have a few body aches, is that the entyvio? And I get a lot of sinus infections. Anyone else respond with sinus problems?
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I, too, am plagued with the sinus infections. My doctor prescribed a steroid that gets injected prior to the infusion. It helps. I've had 4 infusions so far and I think it might be helping, but I still always have abdominal pain.
 
thanks, peluchde.
I will suggest that...and you still have gut pain? Isn't it totally awful? Have you lost weight? In this world it is a big negative if you don't enjoy food...
 
I've been on Entyvio since August and it seems to be helping. Been able to get off prednisone, CRP finally coming done.

I don't get too many side effects after the infusion - some fatigue and a bit of joint pain, but not nothing terrible. Hope it starts working for some of you soon!
 
lgcarter, what is CRP please? You surely have been on a lot of different meds. None of them worked or did you become tolerant of them? How long have you been getting Crohn's medication please?
 
CRP stands for C Reactive Protein. It is an inflammatory marker in your blood. Should be 0. https://www.nlm.nih.gov/medlineplus/ency/article/003356.htm

I started when I was first diagnosed in 2000 with the miler drugs - Pentasa, Sulfasalazine, along with prednisone. Didn't get me into remission, so moved to Remicade and Imuran. That worked for a long time, ditched the Imuran and then was just on Remicade. Went off that to get pregnant. Three drug free years, and then flared.

Tried to go back on Remicade and had a reaction. Tried Humira and Simponi, they didn't work. Stelara sort of did, but still inflammation in my terminal ileum that landed me in the hospital with a partial obstruction in June, which is when I started the Entyvio, along with methotrexate to help prevent antibody formation.

Been on and off Cipro and Flagyl many times to treat abscesses and fistulas.

So, yeah, pretty much been on them all!
 
lgpcarter, I have recently started Entyvio and I believe my dr will also put me on methotrexate so glad to hear someone with my treatment. Now I am on Budesonide, but I am getting so many sinus infections and I think my spine is starting to compress due to the Budesonide.....side effects side effects...evil effects!
 
My daughter is having severe pain in her chest shoulder and back. We have ruled out pulmonary and cardiac causes it seems to be musculoskeletal. Anyone else having issues with this?
 
Hi all! I'm new to this group, and to any support group actually. I'm 23 years old and was diagnosed with Crohn's in September of 2014 after 22 years of knowing something was wrong. Due to my atypical Crohn's symptoms (more constipation than diarrhea, only other real complaint was the pain), no doctor ever took my abdominal pain to be more than just constipation and stress. After a severely bloody bowel movement, a new doctor took my symptoms seriously and through a colonoscopy discovered I had severe ileocolonic Crohn's disease. Since September of last year I've been on Pentasa (wasn't affective), Humira (gave me Lupus like reaction), Remicade (severe allergic reaction), and of course, my favorite (not), prednisone. However, after a high (for me) CRP level, I was put on Cipro, Flagyl, more prednisone, and I just got my first Entyvio infusion a few hours ago. So far so good, I think. I'm very exhausted and almost feel like I'm coming down with a cold now, but I'm waiting to see how I feel in the morning. This is better than the throat swelling and racing heart and hours and hours in the ER following my last infusion (Remicade last month). Fingers crossed this helps!!!

Good luck to all of you! It really is nice to read that others know what I'm going through as well.
 
Welcome Hanna,
Hope you get some relief with Entyveo. Be patient. It takes some time.

Yes, Good support here.

And in case I don't get on here in the next little while...

Merry Christmas and a happy and hopefully healthier New Year to all my fellow Entyveo people.
Gary
 
Kimmidwife I am having similar pain issues as your daughter. Started 4days ago. It's n my right side from just below the rbcage and when it's bad up n my shoulder.
At first I thought t was Crohns but now I think it's musculoskeletal as I have no other Crohns symptoms
Spoke to my doc today and he wants me to do an ultrasound and X-ray tomorrow. Wants to exclude gall bladder issues.
While I did do a lot of heavy yard work recently and could've pulled a muscle or sch I've never had anything like this that was so painful as in unable to move and hurts to breathe. Fortunately it calmed down. I ve been wondering if it's somehow related to entyvio. I am now on every 4 weeks.
 
Welcome HannaA. I, too am finally on Entyvio after severe reaction to Remicade which my body rejected also. I take endecort too which is more mild than prednisone. We are blessed we live in a country that has insurance and access to these strong and very costly drugs. I'm sorry it took so long for your diagnosis. It took 4 years of severe pain for me to be diagnosed. The doctors kept telling me I had reflux! I too have constipation, actually life long; I am 70. Also, the medicines affect my sinuses, so I often feel like I have sinusitis. Are we having fun?
 
Rob rich,
She is also on every four weeks. Please call the entyvio people and report this. They want people to report any unusual occurrences.
The phone number is 1-877-825-3327
 
HannaA and Gail J., I, too, have constipation and abdominal pain with my Crohn's. The doctor at the Mayo yesterday took me off Linzess and told me to use Miralex 3 times a day. I also take two probiotics, lots of vitamins, and the Entiviyo. I started the Entiviy in July along with Imuran, but had to discontinue the Imuran due to very high Enzyme levels. I was taking Bentyl for the pain but the doctor said that causes constipation and to just take Tylenol. I guess he doesn't really know what this pain feels like because Tylenol doesn't work!
 
peluchde, you are still having pain? so the Entyvio is not working? I'm sorry. I am still on Entocort, a mild steroid, which usually keeps me pain free. When I do have pain, it's because I have eaten something I should not, or had an exhausting previous day and/or not slept well. I have to be careful and not overdue in my life. When I do have pain, a heating pad helps, as does Peptobismo and Tylenol. I use the low FODMAP diet. Are there foods you avoid?
 
Still having pain. Not severe obstruction pain, but a constant cramp. I wake up with it and go to sleep with it. The heating pad helps and I usually sleep with it. I used the Miralex twice today. I guess I don't drink enough fluids to have it 3 times, but I'll try again tomorrow. It doesn't matter if I eat or not. The pain is still there. I've tried SCD and aloe Vera juice, with minimal results.
 
call your doctor! My infustion nurses told me I needed to be aggressive with the doctor and his office when I was suffering, otherwise I would just continue to suffer. If we had cancer we would be helped with the pain!
 
So like I mentioned a few days ago, I just got my first Entyvio infusion. What are the most common side effects y'all experienced following your infusions? And how long did they last? I woke up today feeling pretty crummy, body aches, and feeling cold/flu like. Thankfully it's Sunday so I'll just spend the day in bed watching Netflix!!

I'm sure everyone has already gone over this probably a million times, but there are quite a few pages to review!
 
I've had 2 infusions and have been experiencing body aching and sore throat for days, but off and on, depending whether I sleep well or not. I'm not sure it is connected with Entyvio or not.
 
Gail Jothen said:
I've had 2 infusions and have been experiencing body aching and sore throat for days, but off and on, depending whether I sleep well or not. I'm not sure it is connected with Entyvio or not.
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I'm definitely having body aches today and an all over crummy feeling. Extremely exhausted, weak, achey. Bleh.
 
Yep....and I have my 3rd infusion in 2 days so will find out if these aches continue and then I can connect them with the Entyvio. It is so much fun learning what causes what in my body!
 
Hi! It's been a year for me this month! The aches and burning in my hands is still there. Guess one just gets used to it, but it is quite bothersome. Tapering prednisone slowly til end of January, hopefully!! Happy holidays and hope we all start the new year as healthy as possible!!
 
My daughter seems to be having a lot more improvement with the every four week schedule. After this last dose the arthritis pain in her chest has gotten better and she has not complained of much stomach pain. She had an MRE and it looked really good. Fingers crossed that this continues.
 
ctaylor_91 said:
Well i have my rectum to lose. I do NOT want to loose my rectum and get a bag. I am just concerned about side effects with 6mp and the fact that there isn't much info on it combined with entyvio. Etyvio keeps almost all my symptoms of crohns away, besides the anal stenosis, fistulas, and fissures. So my only goal for 6mp would be to heal or just reduce the stenosis so i stop getting obstructions when i'm constipated. Most likely in 10 or 20 years i'm probably going to lose my rectum, i'm just not ready now.
Click to expand...

I have been on 6MP for >1yr. I'm also on 20 mg of Pred. I just took my first Entyvio infusion last week and so far I feel better with no noticeable side effects.
 
My daughter's Pain is back again after eating. It seems she does great for two weeks after entyvio and then it comes back.
 
Merry Christmas everyone! Such a happy and stressful time of year, especially when you are surrounded by food that you can't eat and cooking for everyone else!! My hands are so swollen and as I taper down the prednisone (at 12.5mg) I am noticing more frequent BM and just loss of appetite. Just finished a year with this "miracle drug ", but don't know what else to do and doc doesn't want to give up yet. Kimmidwife, I am so sorry your daughter is suffering. I wish her to start the year better. My daughter is starting with horrible belly pains and is seeing a GI this week. I pray and pray she has not been cursed with this horrible disease. Wish it all on me. Hate to see children suffering. My heart goes out to you all. Feel well
 
A quick question for y'all,
After the last two infusions my daughter got a rash on her arms. Was not really itchy. The first time went away in a few hours this time lasted at least until she went to bed but was gone in the morning. She already gets premeditated with Benadryl and a steroid. Anyone else have this happen?
 
kimmidwife said:
A quick question for y'all,
After the last two infusions my daughter got a rash on her arms. Was not really itchy. The first time went away in a few hours this time lasted at least until she went to bed but was gone in the morning. She already gets premeditated with Benadryl and a steroid. Anyone else have this happen?
Click to expand...

Hi there! I have only had two infusions (I'm getting my third in two weeks), and I too had a non itchy rash. It took a few days to go away, but eventually it just did. Mine happen to be all over my body, but it never was itchy!
 
Have had 4 infursions now and am doing quite well. I absolutely need to quit the Budesonide I have been on for 2 years as it is now preventing me from sleeping. I am down to 1 pill a day, from 3 pills a day. It took me a while and lots of research to realize that the Bedesonide was affecting my sleep. It should not be that hard! Entyvio's side effects for me are a sore throat and a little nagging cough.
 
Hi! Are anyone's hand so swollen they can barely make a fist?!?! And cracked from this darn cold weather!! My hands actually feel like they are on fire !!
 
Howdy Entyveo friends,
Been a while. Update... Camera showed remarkable improvement. I know many of you still suffer, but after years of failed treatment and surgeries, this is good news for me. Lot's of energy too. The only thing has been occasional headaches. But their mild and not as frequent as when I first started entyveo. Hope it keeps working. Wishing all good health.
g
 
Hi Mamabird,
I see your from NJ
Not too cold here on the west coast. I heard you all had lots of snow too.
Hope your hands get better.
 
That's great, Gary! How long have you been on it?

I started in August and I've just had my second maintenance dose. It is definitely working for me, too, though still having issues with partial blockages. Thought was due to inflammation, but am wondering if problem is more inflammation.

I don't really get any side effects. Maybe a little bit of D a couple of days after.
 
My son had infusion #5 in mid-December. Just got results from last week's endo & colonoscopies: biopsies show only minimal crohn's in the colon. First good news in years. He's had active disease from mouth to rectum of most of his 17 years. We can now see a surgeon about getting the fistulas and fissures under control. He's still not feeling great, and his appetite is sub par, but entyvio appears to be working. Glory to God for all things.
 
Texashulkster,
So great to hear that good news.
My daughter has CDiff again. I am wondering if it has something to do with the Entyvio? She never had it before and now has had it twice. Meanwhile the doctor said her culture has tone negative for Cdiff before she gets the next dose which is supposed to be next week. We will retest her on Friday.
 
Boy it has been quiet in our group here!
How is everyone doing?
My daughters infusion this week has been delayed one week due to her having a bad cold and still waiting to see if the Cdiff is gone.
 
kimmidwife said:
Boy it has been quiet in our group here!
How is everyone doing?
My daughters infusion this week has been delayed one week due to her having a bad cold and still waiting to see if the Cdiff is gone.
Click to expand...

Hi Kimidwife,
Boy, your right. quiet here.
Maybe everyone's cured,
Gary
 
I asked this in another thread but maybe it will get answered here. What are your thoughts on the PML risk and Enttyivo?
 
Last edited:
I am cautiously optimistic that PML risk from Entyvio is basically zero. So far, both in theory and in actual observation there have been no cases.

Entyvio binds with the α4β7 subunit of the integrin molecule on the cell surface as opposed to the α4β1 subunit that Tysabri binds. According to the theory this α4β7 specificity avoids the activation of JC virus that causes the PML. And so far the reality has aligned with the theory.
 
Hi everyone! Interesting that you should be speaking about PML. I have had these fevers every night this week and have been forget lately. I am sure it's just the crohns fighting the entyvio and bring overwhelmed with two kids, but the though did occur to me. My bloodwork showed increased monocytes. Has anyone else felt feverish for an extended period of time. Feeling a little paranoid!! My best to everyone!
 
I was starting to have pain again 10 days ago so had another Enyvio infusion, my 4th, and it is NOT helping. Today I am in lots of pain and depressed. FLARE-UP I guess.....
 
Hi all! Hope all is well with everyone!

About two weeks ago I received my third entyvio infusion. My inflammation markers have been improving, as have my symptoms, but about a weeks ago (so a week after my third infusion), I started having severe pain in my collarbone, I guess. I have fairly boney shoulders, and its specifically painful to the touch where the pointy part of my clavicle is (does this make sense to anyone?) Like halfway between my neck and my shoulder, I have a point and it hurts to even touch it. Moving my arm up and down or moving it in general hurts in that location too. Even just the weight of my arm while I am walking hurts. I know this is hard to explain, but I'm doing my best!

Around that time I also got really bad mouth sores (which I have never had before!), a change in my skin on my face (I've always had very clear skin, and now my face is all bumpy- not necessarily pimples, just bumps) and what I believed were hives. I had a bad patch of hives on my neck, a small patch on my lower back (almost directly on my spine), a small patch higher up on my spine, and then a single hive on my hip. It has continued to spread now since too, and I have more on my neck (opposite side this time). Because of this, I saw the NP at my GI, and she said it was pityriasis rosea (a viral infection). She also said that this was the cause of my shoulder/clavicle pain, because the viral infection can make you have body aches. But this just isn't a body ache, this is bone pain and it hurts!

Its been almost a week since I have seen her, so I plan to contact my doctor again to see if they can specifically check out my pain this time, but I just was wondering if ANYONE has had a similar pain or itchy lesions (she said they were actually lesions, not hives), or this virus?

The reason I am concerned about the shoulder is if its from my prednisone use or entyvio or anything, then I want to be able to treat it or at least know how to prevent more pain! I've dealt with plenty of injuries from my years of sports, but this pain is actually quite bad!

Sorry for the novel long post!!
 
Excuse my last comment, "Maybe everyone's cured"
It was a bit of sarcasm because of the lack of post's here lately.
I really know that's not the case.
Hope things get better for all.
g
 
My daughter was able to have her infusion today since the CDiff test came back negative. Hoping it doesn't come back again after the entyvio. She continues to have lot of stomach pain.
 
My daughter every once in a while complains of shortness of breathe. It lasts the whole day when it occurs. She has no other symptoms. She had a chest x Ray a month ago and it was normal. She had her Entyvio Monday and this just started today but is not the first time it has occurred. She is not wheezing. Her lungs are clear. I can't figure it out. Anyone else have any issues with this?
 
kimmidwife: I think all the auto immune disease biologics affect the respiratory system. Or is there any other drug she's on that my be doing this? Or does she smoke or around anyone who smokes? Google every drug she is on and look for this side effect.
 
Two weeks past my son's #6 infusion, and things are looking good. Was able to have a large abscess cleaned up, and the colon & rectal surgeon said she saw no evidence of active crohn's disease. His appetite is slowly improving, and he's starting to think his crohn's may be gone. Good news from a kid who has never known a remission. Gonna start tapering the prednisone and pentasa soon...very very slowly.
 
due to constant pain, about a 3, I asked my doctor for pain medicine. Due to Crohn's I cannot tolerate percocet or oxycontin, so he gave me Fentanyl patch. It helps greatly, but now I am afraid of being addicted as it is an opiate. Anyone else try fentanyl?
 

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