brutal side effects of Entyvio

Hi Everyone,

Formerly rbartolo here.

Had my 2nd Ent infusion on July 29th. Experienced brutal weakness and flu like symptoms for 10 days following. During the flu (5days) my bowel was normal, which always happens when I get a virus. I was knocked out, flat on my back, absolutely no life. My bowel is back to 5-7 times a day. Urgency continues, as does anxiety.

I had my usual dose of IVIG 5 days before Ent so unsure if this is related to why I felt so badly. Still have intense weakness, like I had with hemolysis/c-diff.

Wondering if I'll ever feel like me again??

I've noticed since my 2nd infusion that my poop is firmer....(all normal) and that I don't have to race to the bathroom the instant I wake up....I now have a blessed 5 min.

I'm actually considering stopping Ent. It doesn't seem worth it to be so sick following an infusion. Anyone else experience this? Will the side effects ease up?

WOW!!! I can't imagine how hard it must be to have to work a job and live life in general feeling like that!! What does your GI say about your side effects?

I'm on Humira, never had anything more than a horrible headache after giving myself a shot but learned from ks1905 here at HW to use an antihistamine so I take one before bed the day I do my shots (weekly, not biweekly) and that has stopped the humira headaches.

Definitely talk to your doc, I've never seen anyone else mention those side effects you're having on Entyvio though I may have missed threads on it if they did. Hope you can get it figured sooner rather than later.

pb4- thanks for the empathy. No work for me:( I'd give anything to be well enough too.

gary-- I think so too. I have 3 days of weakness/headache from IVIG....now add 10+ days of ENT and I'm just beyond done. The thought was that the IVIG would keep the PG at bay (recent flare in Feb after almost 8 yrs remission) until ENT kicks in....then wean me off IVIG and hopefully ENT will work for UC and PG. (Holy smokes, lots of acronyms here!). I've sent a message to my GI asking if I should pass on this months IVIG....I'm still very unwell today.

First ENT I had migraines/nausea....but not this insane flu. All I keep thinking is that I'm dealing with weeks upon weeks of side effects and still dealing with UC. Not much of a life...bits and spurts....mostly park with my dog, odd night out but that's it.

Bye-yes. Went from 40 to 6. Still holding there but not in remission.
Options are still giving Ent a chance. I said I'd commit for 14 weeks....just wasn't expecting this! Will likely stop ivig to see if it makes a difference.

Still trying for FMT's. Other options are humaria/simponi and other biologics.

As far as surgery, I'm not a candidate for j-pouch & I'm not willing to go the bag root. My mom very unhappy with hers, plus she got another autoimmune disease just after. My GI does not know if having my colon out with activate my PG & it seems very risky. I do have a referral for a surgeon to speak about this issue, but that's months away. In the mean time...

U B Tough said...
Bye-yes. Went from 40 to 6. Still holding there but not in remission.
Options are still giving Ent a chance. I said I'd commit for 14 weeks....just wasn't expecting this! Will likely stop ivig to see if it makes a difference.

Still trying for FMT's. Other options are humaria/simponi and other biologics.

As far as surgery, I'm not a candidate for j-pouch & I'm not willing to go the bag root. My mom very unhappy with hers, plus she got another autoimmune disease just after. My GI does not know if having my colon out with activate my PG & it seems very risky. I do have a referral for a surgeon to speak about this issue, but that's months away. In the mean time...

I'm sorry to hear that. I hope you can find relief soon with the entyvio or another biologic.

After Remicade stopped working, I was put on Entyvio and had anxiety issues because of feeling "funny". After the initial 2 week and 4 weeks waiting schedule, these seemed to dissipate and I felt nothing. HoweverI am now scheduled for surgery as the last colonoscopy has shown displasia and cancer threat. the GI was impressed by the healing results of Entyvio as I had one of the worst cases of UC he had treated

Stage one cancer? So you're getting a colectomy?

I ending up having an ileostomy done to remove the diseased/cancer in my colon. Had my whole colon removed and anus. Will need follow up CT scans every year and blood work every 6 months for the next 5 years to be sure the cancer doesn't come back. I have been on a lot of the medications you are trying but I also have had the Crohn's/Colitis for almost 25 years. I also had two pulmonary embolisms within a year of each other (this was about 6 years ago). GI doctor said the PEs can be caused by Crohn's disease too.