Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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My daughters goes for entyvio number five this week. praying that this one is the magic to get her really feeling better and staying that way!
 
Kimmidwife!! Best to her!! Number five definitely turned to the better for me eventually! Fingers and toes crossed! The bad days are getting less very slowly but surely! And welcome RJF! I am at 26 years too! Diagnosed at 15 after a very long process of doctors and tests, then finally emergency resection. Good thoughts to all!!
 
As the Enyvio has brought only side effects, it is likely I will receive no more infusions.

Off to the hospital tomorrow for a few days of tests to see what the narf is going on. Any advances in health have been wiped out. I guess this hospitalization is the next major offensive.:ybatty:

Will any of us achieve an agreeable state of normality?

See y'all post testing........
 
Good luck, Mr. Polar Bear! Any idea what kind of testing awaits in the hospital? At least there you will get it all over with and get some good drugs to help you through, hopefully.
 
Hang in there Mr. Polar bear. I was very close to giving up as well, and after another MRENTEROGRAPHY showed no active disease, I am on a tapering dose of prednisone and they added 6mp. Definitely doing much better. Hope you find better days soon
 
Just had infusion #3. This time the doctor ordered a steroid injection prior and so far no sinus and throat issues. Stomach has been good and I'm gaining weight. Can only get better from here😊
 
I am 3 in and scheduled for 4th next month. I was on 6MP, but ended up in the hospital for 2 nights in early July. They suspected the 6MP was causing the side effects that landed me in the hospital (i.e. RLQ pain, rectal pain). I've been off of 6MP for over a month. I'm on Pred (started at 40 and tapered now to 20). I am still having RLQ pain, less than July, but still moderate. I am still having rectal pain and bleeding from fistula tract, but pain is less than hospitalization.

I had MR last week. It showed mild inflammation in distal ileum, moderate inflammation in recto-sigmoid junction and questionable peri-anal fistula. CRS says scan did not go far enough to pick up the fistula we already know about. He is looking at films with radiologist to formulate plan. I'm waiting on his call this week. I have GI appointment next week.

At this point, I am so tired. I am so frustrated. My GI has indicated that he does want to add either 6MP again or Methotrexate. No one seems to be able to explain the RLQ pain considering the "mild" inflammation that showed on MR. My C-Reactive protein never showed anything. The Calprotectin is within normal limits. It's clear I have active disease. I have inflammation. I have at least one fistula that will not heal. I just sometimes feel when all these tests are normal, people don't believe the pain you are in.

I am sorry for the vent. Just had to let it out. Thanks.
 
ey218 said:
I am 3 in and scheduled for 4th next month. I was on 6MP, but ended up in the hospital for 2 nights in early July. They suspected the 6MP was causing the side effects that landed me in the hospital (i.e. RLQ pain, rectal pain). I've been off of 6MP for over a month. I'm on Pred (started at 40 and tapered now to 20). I am still having RLQ pain, less than July, but still moderate. I am still having rectal pain and bleeding from fistula tract, but pain is less than hospitalization.

I had MR last week. It showed mild inflammation in distal ileum, moderate inflammation in recto-sigmoid junction and questionable peri-anal fistula. CRS says scan did not go far enough to pick up the fistula we already know about. He is looking at films with radiologist to formulate plan. I'm waiting on his call this week. I have GI appointment next week.

At this point, I am so tired. I am so frustrated. My GI has indicated that he does want to add either 6MP again or Methotrexate. No one seems to be able to explain the RLQ pain considering the "mild" inflammation that showed on MR. My C-Reactive protein never showed anything. The Calprotectin is within normal limits. It's clear I have active disease. I have inflammation. I have at least one fistula that will not heal. I just sometimes feel when all these tests are normal, people don't believe the pain you are in.

I am sorry for the vent. Just had to let it out. Thanks.
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No one with an IBD needs to apologize to vent. You are authorized to vent more than most... trust me :) My wife just had her 6th infusion yesterday, which went well, but fatigue quickly set in. She is also having pain in a few locations in her abdomen, but the GI doc & colo rectal surgeon are offering no explanations as to what might be causing it. Adhesions maybe? Who knows, but the scopes & biopsies turned up nothing. Inflammation is wayyyy down according to the surgeon, and an ulcer on her ileoanal pouch even healed itself!
 
Has anyone gone down to six weeks in between instead of eight and had better succes with that?
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Kimmidwife, I just got insurance approval to do so (without any back-and-forth, which surprised me), and my first 6-week infusion is tomorrow. I am actually doing pretty well, but I backslide at the 5-6 week mark, consistently, and that has kept me from being able to stay off Uceris.

I have noticed, though, that the "good period" after each infusion is getting better and better, even with the backsliding (and it is miles better than I have done on Uceris alone, so I know that Entyvio is doing something). I'm hoping that getting infusions every 6 weeks will keep enough Entyvio in my system that this stops happening, and I'll be able to finally quit Uceris for good.

To everyone else: I've been on this stuff for a year now. A YEAR. I didn't see results that I could truly believe were results until after my 5th-6th infusion (that's around the time I started to gain weight). I have Crohn's (terminal ileum and entire colon), it has been very hard to control over the last 3 years, and TNF-blockers did absolutely nothing for me. My gastro is telling patients to give Entyvio at least 6-7 months, if not longer, to see results (results, not remission).
 
Yes, this is a treatment that requires a LOT of patience (particularly for the Crohnies - UC patients seem to respond faster). I honestly think that most of us should be on a bridge med (steroid), or an additional low-dose immunosuppressant (MTX or Imuran) to keep us afloat while we wait for it to kick-in (or to help it kick-in). I have a gut feeling, based on all of the patient testimony I've read, that this is one of those meds that isn't the best at inducing remission so much as maintaining it (at least for the Crohnies).

But, the spectre of PML (thanks, Tysabri!) has kind of ruined that for those of us who started Entyvio right after FDA approval...
 
I had results after my first dose, bit faded away at the two week mark, now that I'm down to the maintenance doses I'm freaking out!! I wish I could have it every couple weeks.
 
I completed my 4th infusion last week. I now have a rash that looks like ring worm but doesn't respond to anti fungal cream. It's getting worse. I'm going up contact my doctor immediately. Any body else had a rash or itching?
 
I've had my 3rd injection and I am physically exhausted. My brain is muddled and I'm not doing my job as well as I've been. I have a rectal prolapse and I'm bleeding with every BM. Going back to GI next week, who I'm sure will just add the steroids back to the mix? I hate them, as I swell up and can't sleep. Might be time for surgery? Any thoughts on this?
 
I've never had the dizzy side effect, but do experience fatigue after infusion. I am on an eight week rotation and can tell I've "run out" after week 6. Will be going to the doctor next week to see if changing the frequency will help.

As far as new symptoms dry heaving and bloody, black stools. Going to for blood work this week.

This forum is great, you can share and encourage all with others who are experiencing similar issues and are truly interested in helping.
 
BlueSky said:
I completed my 4th infusion last week. I now have a rash that looks like ring worm but doesn't respond to anti fungal cream. It's getting worse. I'm going up contact my doctor immediately. Any body else had a rash or itching?
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Interesting you mention that Blue sky. I have a small rash that resembles wring worm? Otherwise I feel great.

Yes Dog lover.
Good support here.
Gary
 
Mr Polar Bear returns home after hospital stay and testing...

in a capsule, problems experienced are possibly due to starting Entyvio too soon after stopping Remicade. I await blood culture results. Feeling not as tired or in pain,but it is slow going.
 
Peluchde, I had he same exact issue as you with the bleeding after the third infusion. I was so nervous I considered stopping, but thankfully it stopped. Going for number 7 in ten days. Sending my best to all
 
BlueSky said:
I completed my 4th infusion last week. I now have a rash that looks like ring worm but doesn't respond to anti fungal cream. It's getting worse. I'm going up contact my doctor immediately. Any body else had a rash or itching?
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My wife got what looked like a heat rash after her last infusion (on her wrist near the needle site), but it went away after a few days. Did you find out what it was?
 
My daughter had infusing number five last week and has had the least side effects this time. The usual headache didn't start until two days after and only lasted two days and she just seemed much better overall. I am so pleased! Really hoping it is starting g to work!
 
Had my third infusion last week. I get terrible pain in my shoulders and all down my left arm. Sleeping has been hard because the pain wakes me up. I can't try sleeping on my belly because I have an ostomy which for the last two nights and occasional fills up with so much gas that the seal becomes compromised so I get to wake up with severe pain and poo on me
 
Is there anything you can take/be given to reduce gassiness (that obviously will not be detrimental/add more complications)?

Have you been prescribed painkillers to help with the Crohn's aches and Entyvio side effects?

I pray the Enytvio will eventually kick in full power and you will find relief soon.

"The tyrant's heel is on thy shore, Maryland, my Maryland."
 
I have had my 3rd Entyvio infusion and also hoped it would be the miracle for my UC because it is my last option. I do not have any side effects from the infusions and actually refuse my pre-meds at every appointment because there is no way I can take Benadryl and not be in a coma the rest of the day and I do not see the point in taking Tylenol unless I need it of course.

I have recently weaned off prednisone and Imuran (as you are not supposed to have to take other medications with Entyvio) but am still in a severe flare. I am not too upset about the weaning of the other meds because they were not working anyway and I have a love/hate relationship with prednisone, but the love only comes if it is working.

I am wondering how long I should give the Entyvio to work its magic. I am literally hanging on by a thread here trying not to sign up for a partial colectomy to just be finished with this. I am so tired of the body aches, joint pain, low grade fevers, extreme fatigue, low hemoglobin, and my family telling me how grouchy I am every day. Has anyone actually seen remission yet with Entyvio? I know the trials were promising for UC.
 
peluchde said:
I've had my 3rd injection and I am physically exhausted. My brain is muddled and I'm not doing my job as well as I've been. I have a rectal prolapse and I'm bleeding with every BM. Going back to GI next week, who I'm sure will just add the steroids back to the mix? I hate them, as I swell up and can't sleep. Might be time for surgery? Any thoughts on this?
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I am right there with you. I feel the EXACT same way, bleeding every trip to the bathroom, physically exhausted, joint pain, body aches, low grade fevers, foggy brain, lack of motivation, etc. Have they checked your hemoglobin recently? Mine was low at 10.3 which explains many of the ailments, started on high dose iron....hopefully it will help with the blood loss at least. I also swell up like crazy and can't sleep with prednisone. I am looking for the surgery answer myself. It seems the house is divided between do it and don't.
 
To get e entyvio to work for me we added MTX and increased the entyvio to every 4 weeks
Inflammation in bowels cleared up and fistula closed.
Who said you can't take other meds with entyvio?
That is totally untrue.
When you are in a difficult sit like you it is likely you will need a combination of drugs to achieve remission.
Not fun but beats surgery ( which doesn't cure Crohns and offers no guarantee against recurrence elsewhere)
Good luck
 
Hey Robrich, not that I can't take other meds with Entyvio but (in theory) you shouldn't have to. It is nice to know that combination worked for you, I see my GI tomorrow, I will ask about it.
 
I'm starting Entyvio next week and with my nasty UC flare I'm in 40mg of Prednisone and Imuran as well and will be until we see results of the Entyvio. Cancer likeliness increases with the Imuran but depending on your situation(similar to mine) do whatever you can to try to get stable with Meds before surgery. It may be inevitable but you can do other Meds with Entyvio so I'm told anyway. Here's hoping it works for us, cheers!
 
May it work for you. 2nd infusion yesterday I was given. So far so good. More tremors than usual though, and unseasonably warm days also do not help.

Ice cold bear hugs for all sufferers (gals) massive pawshake for us guys :ycool:
 
Just had my 3rd Infusion of Entyvio yesterday. Of course nothing has changed. My Doctor is having me do another colonoscopy first of December to see if it is helping with the inflammation. Sure wish there was another way of checking.
 
Hang in there everyone!! I am of pred and had my 7th infusion on August 31st. In combination with 6mp, I can say I am feeling pretty good. Side effects of nausea and gas are better (not gone) and my BM are more formed and much less frequent (maybe 3-4x/day) I still have perianal issues, but I am taking this improvement one day at a time. I hope this sends out some hope and encouragement. Best to all
 
I knew there were better days ahead for you mama.
I too have more formed stool. I'm between 3rd & 4th infusion. I think this stuff may actually be working. I heard of something new called SSI (site specific imunomodulator) It just goes to show that there always coming up with something new. We'll figure this out yet.
 
My daughters doctor is discussing doing her infusions every four weeks instead of eight. Has anyone else had them moved closer?
Also wondering why he wants to go right to four and not try six weeks first?
 
Timing of infusions............perhaps the doc sees a greater possibility of increasing a positive response to the drug......

Having reacted with the plethora of Entyvio side effects after two seperate attempts, I bid farewell to Entyvio, hello to another round of blood work, then back to the doc to see what can be done at this point.

Feeling like Frodo on his way to Mordor, with the Ring/Crohn's getting heavier with each step.
 
I moved from 8 to 4 weeks with excellent results.
No side effects for me at all.
That's the protocol today.
We did discuss dropping to every six weeks but not for awhile
Very happy to be in remission don't want to risk that.
If I were you I'd go for it.
 
Just took my first dose of Entyvio yesterday, 9/22 , and happily had no bad reactions except diarrhea today.
 
I would hope for you that this is due more from crohns/colitis and not a reaction from entyvio. I have more formed stool since starting entyvio.
I'm between 3rd and 4th dose.
Gary
 
Dee, so glad to hear no reaction from the Entyvio. Gary, I am also between my 3rd and 4th dose. The next one is scheduled for November 3rd. So far I have had no change but not going to give up.
 
My daughter was admitted for severe pain Tuesday night.
They scoped her this morning. The doctor said overall her intestines don't look to bad except for one area, the area of anastomoses, where they put the two ends together after her resection. He said that area is very red and angry. He thinks the entyvio and methotrexate are working but we need it to kick in in that area. He is talking about start in her on entocort for a while.
 
3 days after 1st infusion and I got the burning stomach ache yesterday and a little today. I also started bleeding yesterday but that's part of my problem. At least the diarrhea stopped.
 
Hello everyone.
Thought I'd pass on some of what I've experienced so far with Entyvio and crohns. After two bowel resections Drs had me try a variety of drugs. I previously tried humira then cimzia along with Pred, Budesinide, and Imuran. Any positive improvements were short lived. And new scope and MRE showed continued inflammatory cells in the mid-small bowel and ileum, especially at the anastomoses site. Every time I attempted to wean from Budesinide (which I had been taking for 2 years) I had pain and bleeding.

After a lot of hoop-jumping finally got approval from insurance to start Entyvio last February. Strangely enough I was surprised to feel a lot better within the first couple doses. So as to not get my hopes up I have been hesitant to even wish for this to be a remission. But now after about 7 months I can say I've consistently felt pretty darn good. I have a follow up with my GI on 10/1 and we will see if she pronounces it "remission". My symptoms aren't completely gone as I still have diarrhea (not nearly as often) but no abdominal pain.

As for side effects. I do have extreme fatigue for only a couple days after an infusion, and quite a lot of joint pain and stiffness all the time. Other than those couple of days after infusion my energy level is greatly increased. I do find that if I over do it activity-wise I get a day where I'm very tired and don't feel like moving at all. I guess I need to learn what my limitations are.

I was able to wean from the Budesinide but do still take the Imuran. Dr says that it may help keep me from developing antibodies to Entyvio. Though I can only take 75 mg as my liver doesn't tolerate higher.

Hope is hard to come by and we all have to find the right combination of meds that work for us. I've felt so helpless and hopeless in the past, and I didn't know that help was soon to come. Don't despair. I am wishing you all well and hoping you have success with this drug. It has made a life-changing difference in mine and I wish that for all of you as well.

Best wishes,
Sara
 
Saratoy,
Thank's for your post. Very positive. I had one rough night last week. ( Gut ache & the D returned with a vengeance) But definitely more good days since starting Entyvio. Never heard of budesonide before. Imuno suppresant?
Wishing good health to all.
 
Gary
Hope you feel better soon. I do still have bad days now and again but are fewer and farther between.
Budesinide is generic for Entocort. From what I understand it is a less powerful steroid that is more gut specific than systemic prednisone. But still a steroid.
The Imuran (aka azathioprine) is an immunologist-suppressant.
Lol. Not even sure if I'm spelling them right.
Take care and keep your chin up
 
Thanks, I felt better next day. Many more good days than bad since starting entyvio.
Chin is always up. It's cleche, but I am a firm believer in "play the best with the cards your dealt"
All the best to you too
 
Been on Entyvio infusions for one year. Had resection prior to Entyvio. Also had been on Imuran, Humira, Prednisone, Entocort and several other drugs prior to the Entyvio.
I can't say that it's a huge difference in my GI symptoms bc since my resection last September I always have Diarrhea between 5-15 times a day. My energy level got better after my resection and I can tell a tremendous difference in energy level since starting a "super B complex" vitamin (which due to the distal part of small intestine being removed during resection could have caused some absorption issues.
My question is to everyone.
Any have any swollen lymph nodes? Like in one area. Not due to illness. Not due to recent surgery.
I have swollen lymph nodes in my left elbow crease for a couple months now. Tried antibiotics, just to see if could be underlying infection even though my white count was normal. My RBC's were a bit low and I do have some night sweats but I'm a 40 year old woman lol. I know it sounds "lymphoma like" and I am scheduled to have a biopsy October 7th. I would just like to know if anyone else has had similar issues.
Thanks for your time.
YatesM
 
I am very sorry to hear about the lymph nodes. There has been other people I have heard about with lymph nodes that turned out to be benign. It seems to happen sometimes with crohns. Hopefully yours will be too! Keep us posted!
 
We found out my daughters cultures came back positive for Cdiff. Has anyone else had Cdiff while taking entyvio?
They delayed her next infusion and are holding her methotrexate. They started her on vancomycin and we have to retest in two weeks.
 
Kimmidwife,
I haven't had c-diff or know of anyone that has gotten c-diff while on Entyvio. I know that the vancomycin is a great drug and the drug of choice to treat c-diff though. I am so sorry that your daughter has to go through the pain of c-diff. I hope that the vancomycin works quickly and she is over the c-diff soon.
Thanks for the information on the swollen lymph nodes you have heard about. I'm more hopeful now.
 
Not on Entyvio but I had CDiff on Remicade and got my infusion on schedule anyway. My Doc said we needed to control the C Diff as well as the flare up caused by the C Diff.

Hopefully the CDiff will be gone fast. I know it sucks to have.
 
That would be a tough call, frozengirl and kimmidwife. Need the Entyvio for the flare but need immune system help to get rid of c-diff. I have been fortunate thus far on not getting c-diff.
 
M son just had 4th infusion bit of a flare up between 3 and 4. How long after infusion should he feel better?
 
I've read a lot of the post and so glad to find a site that speaks candidly about Crohn's! I was diagnosed 11 yrs ago through surgery and was in remission for those 11 yrs. My Crohn's came back in April and after starting Cimzia in June I haven't had any relief except for the few wks my doctor put be on Predisone...which I felt GREAT!! (only down side were the sleep-less night but I"ll take that over abdominal pain and lack of energy any day!) I just got off the Predisone last wk and my symptoms returned almost immediately (lack of energy, abdominal pain, back pain, abdominal bloating and tenderness). Talked to my doctor today and he wants me to start on Entyvio next week in place of the Cimzia, but after reading a lot of these post I'm scared out of my mind! Any advice would be great! The only thing that I can find that relieves me from my symptoms is a mostly liquid diet without gluten...anyone else having those same issues? I don't have the BM frequency that it sounds like most of you do...I go at most 3x a day...sounds like I should say "Praise God" after that! Do any of you do special diets/vitamins in addition to Entyvio?
Thanks a bunch, and glad to join the conversation!
 
Welcome Awoodgirl!
Entyvio has not been bad for my daughter. She has done decently on it. The biggest thing is it takes a really long time to work. I feel she is finally making progress with it. Sadly we now have this hiccup with Cdiff but I am hoping it resolves quickly.
 
Thank you kimmidwife! Did she get the Cdiff from the meds? Also my dr. told me the Entyvio would work after the first infusion (maybe that's why he wants to put me back on Predinsone too !??!)...I see I have many questions for him. :)
 
My gastrodoc told me that the large majority on the patients who agreed to try Entyvio reacted negatively to the infusion. I might try infusion number 3, depending on the results of yet another set of specific blood tests. It is suspected I might be harbouring an infectious disease of some kind, since nothing biologic drug-wise is working.
I have been placed on a minimal dose of the preds (doc does not want to increase dosage again as my reactions to the drug at elevated levels has been negative) and use Ty4 for the constantly growing pain.

Welcome AWood Girl! I pray Entyvio will work for you and you wont have to be on Pred for very long.

If you have any spare pecan pies, sweet tea, hush puppies, catfish, or cornbread, let this Southern loving polar bear know!:ycool: (I miss my "adopted" family in Mississippi so much. Too sick to travel that far now.)
 
Awoodgirl,
Entyvio takes months to work. I am not sure what exactly your doctor was speaking about when he said it would work right away.
 
Hi,

having been diagnosed with Crohns 28 years ago I tried, pentasa, azatiopurine, purinetol, prednison,budesonide remicade, humira and entyvio as well. Most meds work wel however couldnt tolerate the azatio/purinetol/mercaputine etc. Remicade worked like a charm but developed antibodies after 5yrs, Humira was introduced to fast so didnt work ... Entyvio was introduced 1/2 weeks after humira was stopped. Got serious side effects from it (rash, fatigue, diziness, liver flucutatiing) the diziness did not really go away... Entyvio worked quite well on my intestines! and receivd 3 injections build the side effects where too scary...
 
Jrapp said:
M son just had 4th infusion bit of a flare up between 3 and 4. How long after infusion should he feel better?
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Hi Jrapp. I've had similar issues between infusions. It's like my body knows it's almost time to get a booster. Anyway, it usually takes me only a few days before I'm feeling good again. The day of infusion I'm always tired and a little groggy. But the next couple are improvements until it seems to "kick in"
 
Thanks kimmidwife and Mr. Polar Bear We'll see what my dr says today!! I've been praying and praying for him and myself to make the right decision. I just hate hearing about all these Entyvio side effects...I rather just keep the tummy pain and eat very little. ;)
Oh and Mr. Polar Bear...you forgot to add homemade peach ice cream and fried green tomatoes!
 
I also forgot Cajun boiled goober peas, collard greens, bbq brisket, fried dill pickles:ycool:

I wish I was in the land of cotton,
if mah gut didnt feel so rotten,
but I pray every day, to see again
Dixieland.

Have a better day everyone.:ghug:
 
developed antibodies to Remicade which only helped 3 weeks after the 4th infusion and no help after the 5th. So will try Entyvio. What is TNF and PML? I have Crohn's for 6 years, diagnosed not until year 5. Waiting for Blue Cross to approve. Also on Medicare which will probably approve it, I hope. I am in daily pain and it seems to control my life.
 
TNF=Tumor necrosis factor/ blocker. Entyvio is not a TNF blocker. Works different than the other TNF blockers (Humira, Remicade) Not an expert, ask yours, but that's my understanding. The other acronym you mention I've never heard of. Hope you get some relief with entyvio.
 
I trust Entyvio will be the option for you Gail, as it appears that it does not work that well for most. I went to sub-therapeutic levels for Remicade about seven months after starting. Entyvio has not worked for me. Dont know what the next step is. Also living each day in discomfort to pain like yourself. Preds and Tylenol can only do so much. Never give up hope!:thumleft:
 
Gail Jothen said:
thanks Gary. And what is tumor necrosis? I heard of PML from reading other posts on this site.
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Gail,
Probably best just to look it up. https://en.wikipedia.org/wiki/TNF_inhibitor

I wouldn't be freaked out about serious side effects. These are rare, And what is really worse? Potential side effects or known side effects of out of control crohns. I'm really not a drug salesman. Just a fellow crohnie. :wink:
 
I have Tylenol 4 prescribed for my bear sized aches and pains. No longer on Entyvio as it caused more pain than anything else (a variation of the pain I normally have with my triple threat immune diseases. Thought I had just two but it is now three. ) My liver is already mildly knackered thus all the pain killers are NOT doing that organ a favour.
 
Vettemen,
My daughter gets increased joint pain as she gets closer to the next infusion and I definitely don't think it ever improves as. I have as it did on remicade.
Mr. polar bear, be careful and take care of your liver! Tylenol is actually the worst drug for the liver. Ask for pain meds that don't contain Tylenol.
 
My son had his 4th injection of entyvio 2 weeks ago and is having progressive increased back and leg pain. Did anyone else get this? Did it get worse or better over the 8!week span? Did it happen again with the next injection? What did you do to help it? Thanks for the help!!!!!
 
I've been taking Entyvio for a year. It worked pretty good for 6 months then i started having fevers again and thrush like symptoms (probably the crohns) and had to go back on prednisone and am starting 6mp. Remicade fizzeled out and cimzia didn't work so i hope 6 mp helps it work enough till the next med comes along.
 
Jrapp and jbiggers,
I am very sorry to hear.
Jrapp,
I have heard of some people having worsening arthritic pain but back pain can also be a sign of a flare and entyvio can take a very long time to work. I would call the doctor.
 
That's good to know it may take while to work. That's actually some hope it will kick in. In touch with dr just trying to get thru till this works or something new. Not sure if i want to try remicade again yet I had a lot of trouble when it fizzled arthritis and all the aches. Never have figured out if it was remicade or crohns.
 
Just got my third infusion of Entyvio, first two seemed okay. This one having some trouble not sure what it is. Have a fever or at least acts like a fever comes in flashes and if I hadn't already gone through menopause I would think that this was it. Eating is a non starter - pain like when I had pancreatitis but not as bad in the same area though, and really bad dh. Am still on prednisone 20 mg a day - will this get better? Thoughts?
 
GRUMPY1: I would phone the Entyvio help number (I assume they have one, Remicade does) and ask your questions. When my 5th Remicade infusion did nothing and I was in lots of pain, I phoned them. They gave me interesting research numbers, I can't recall all, but it was like, " only 32% of people are helped with Remicade within 30 days, and that number goes down to 25% in 50 days." I was shocked, rather naive thinking any med helps everyone. Not true. I get my 1st Entyvio infusion Oct. 30.
 
My gastrodoc informed me that the vast majority of his patients who were started om Entyvio wer/are not getting any better, if not worse. It was worth a shot for me but it failed.

Painkillers.......

As I cannot take Advil or Aleve or any drug in that class, Tylenol is my only recourse.

Happy Canadian Thanksgiving :) and Columbus Day
 
I've had 3 infusions and my 4th was just cancelled until I have a brain MRI to rule out PML. I don't think that's it. I just have lots of symptoms right now. Has anyone else loss handfuls of hair on Entiviyo? I'm going to be bald soon. Doc says "it's not one of the listed side effects", so maybe it's just stress! I've had way more stress than this before.
 
Mr. Polar Bear said:
My gastrodoc informed me that the vast majority of his patients who were started om Entyvio wer/are not getting any better, if not worse. It was worth a shot for me but it failed.

Painkillers.......

As I cannot take Advil or Aleve or any drug in that class, Tylenol is my only recourse.

Happy Canadian Thanksgiving :) and Columbus Day
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Tylenol is my only drug as well, Entyvio is my last hope other than steroids so I'm hoping this is just a minor reaction. I hope that things get better for you.
 
Peluchede,
I have heard of other people losing their hair from entyvio. I think it is a rare side effect. Call the company and ask them.
 
My 14 year old son will have his 4th Entyvio infusion tomorrow. So far so good. He's feeling better than he did on Remicade, and aside from the post infusion tiredness and some muscle and joint pain - which passed after a couple of days - no significant side effects.

He is still dealing with perianal abscesses, which we are hoping will improve as this therapy continues. Has anyone seen improvement with perianal abscesses while on Entyvio?
 
JRAPP - my 12 year old daughter has had around 4 treatments also and has horrible back/shoulder pain and ankle pain. She has tried a few drugs to relieve the pain with no success. She is just starting low dose methotrexate.

I wonder if this pain is more common in kids?
 
Perhaps it is in children the muscular and back pain. The strange thing is that it started only a week after the infusion after playing baseball. Unfortunately, it is still present after a week. He saw his GP to rule out anything else. The Gastro has no idea and the entyvio hot line either. Argh! HELP! He is going to u his prednisone - wonder drug- to 2 mg after being down to 5.any ther suggestions?
 
Just a quick note to my earlier post - was in the hospital here and they don't believe that it was the entyvio think it is my gallbladder and that the problem is from when I had pancreatitis with Imuran and my gb was badly infected and affected by the drug - seems I now have stones and particularly one right at the neck of the gb - which means so far so good with the entyvio.....
 
My daughter had her seventh infusion Wednesday. First time so far not having a terrible headache for several days after. She is having some bad stomach pain but I understand that is not uncommon for a few days after the infusion.
 
Texashulkster,
I have heard on another board of people having improvement in the perianal area with entyvio. Hope it helps!
 
Hi everyone! Been a while and hoping today is a good day for you all. Had my ninth infusion on Monday and it is not going well. Can't keep anything in and the perianal area feels like road rash. I hope tomorrow takes a turn around because I think I lost five lbs this week! So frustrated b/c I was on 6mp too for a few months and it did nothing but give me mouth sores and cavities from excessive dry mouth. Sorry for the long story. Feeling a little hopeless and not wanting to do prednisone again!!!! Fingers crossed for a better tomorrow!!
 
Thinking about you, Mamabird. It isn't going great for me either, unless you ask my doctors who say everything is fine!
 
texashulkster said:
He is still dealing with perianal abscesses, which we are hoping will improve as this therapy continues. Has anyone seen improvement with perianal abscesses while on Entyvio?
Click to expand...

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.
 
Hi All,
Been a while.
4 infusions with Entyveo and it seems to be working for me. Wish it was working for all of you. I say "seem's to be working" but the proof will be in the pudding / bowel. We'll see what the camera shows early in the New Year.

After a recent colonoscopy a Dr. & patient see nothing abnormal. The patient ask's the Dr. for a note to prove to his wife that his head is NOT up there. :rof:

Good health to all.
 
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I'm so healthy... My bloodwork, colonoscopy, stool everything is a okay... Other than the fact that I abscessed again and had surgery again today... With just a local...
 

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