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question about entyvio side effects

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Ulcerative Colitis
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PamSmith
Regular Member
Joined : May 2010
Posts : 266
Posted 3/3/2020 1:39 PM (GMT -7)
I am on 6mp currently but reading that people go for entyvio next and avoid remicade/Humira as it works better if you never used anti-TNF.
I know Remicade/Humira has some side effects like Lupus or psoriasis. Does entyvio has those side effects? I don't read those side effects online but it is newer medicine compared to remicade and Humira, so like to hear from people who are actually using entivio of any side effect they had it.
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UCinsouthfl
Regular Member
Joined : Mar 2014
Posts : 194
Posted 3/3/2020 2:42 PM (GMT -7)
Hello,

I've been taking entyvio for around 8 months and I don't have any side effects. I'm not sure about the Lupus/Psoriasis side effect but I wouldn't doubt it. I think all biologics have similar risks. Maybe the only difference is Entyvio is gut specific I think. Humira didn't work for me. Good luck!

Chris
38 year old male
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greenuc
Regular Member
Joined : Sep 2011
Posts : 283
Posted 3/3/2020 2:45 PM (GMT -7)
The clinical studies showed no difference in side effects vs placebo.

My personal experience with this drug is similar in that I have experienced absolutely no side effects after more than 6 months on it.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2235
Posted 3/3/2020 5:33 PM (GMT -7)
I don't know if those are possible side effects. I do know that I had zero side effects. I loved Entyvio. It worked fairly fast (by the end of my loading doses), and I felt 100% like I did pre-UC. Sadly remission did not last long for me. It works for years for many people though so hoping you are one of those.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1414
Posted 3/3/2020 5:35 PM (GMT -7)
This month will be my 3 year anniversary on entyvio. I’m very happily in remission — confirmed by colonoscopy with biopsy. I have zero side effects.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2235
Posted 3/3/2020 6:06 PM (GMT -7)
Congrats, Flowers!!!
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tiredofallthispoop
Regular Member
Joined : Jan 2017
Posts : 242
Posted 3/4/2020 1:07 PM (GMT -7)
Entyvio kept my psoriasis in check, but gave me horribly debilitating joint and muscle pain. I would rather spend half my life on the toilet than go through that again.
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Makemesmile
New Member
Joined : Mar 2020
Posts : 6
Posted 3/4/2020 6:16 PM (GMT -7)
Hi PamSmith. I've been on Entyvio for almost 5 months now and have not had any side effects. I'm no longer in a flare, blood in stool is gone, urgency is completely gone, knock on wood. This is my first biologic.
Good luck!
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7223
Posted 3/4/2020 7:45 PM (GMT -7)

greenuc said...
The clinical studies showed no difference in side effects vs placebo.

At all? Or just for the side effects the OP mentioned?
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greenuc
Regular Member
Joined : Sep 2011
Posts : 283
Posted 3/4/2020 7:59 PM (GMT -7)

Sara14 said...
At all? Or just for the side effects the OP mentioned?

No side effect difference at all versus placebo. Of course these studies are usually a year in length so don't explore super long term side effects. That said, long term follow up studies thus far also show a very strong safety profile.
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Casey_LB
Regular Member
Joined : Mar 2015
Posts : 309
Posted 3/4/2020 11:14 PM (GMT -7)
I'm 4 years on Entyvio. Started with infusions every 8 weeks, went up to every 4 weeks and now back to 8 weeks. For about 6 months I had a very mild rash on my forehead, which might have been due to Enytyvio, but it went away years ago. No other side effects.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7223
Posted 3/7/2020 8:50 PM (GMT -7)
I'm going to try Entyvio next. I researched it pretty thoroughly online this weekend. It has the best safety profile of any of the newer UC meds. No black box warning for cancer or serious infections like Remicade, Humira, Stelara and Xeljanz all have!
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16389
Posted 3/9/2020 4:36 AM (GMT -7)
The odds of entyvio helping to improve your UC symptoms are about 65%. Entyvio should be inherently safer than other 100% systematic biologics (like remicade, humira, and simponi) are, as Entyvio is a Site-Specific-Immunomodulator that targets just the gastero-intestinal tract. Safer as you're only suppressing the immune system within a specific region of your body, it is less likely that you'd get infections elsewhere within your body as would be the case with systematic Remicade.

What kind of side effects could you get and what are the odds? Everything carries a small degree of risk and it's good to understand what that's all about. Let's delve a little deeper into risk.

"about 4% of patients experience infusion-related reactions either at the time you are receiving your medication, or within 48 hours of it." Infusion reactions are headaches, raised body temperature, flushing of the face, fatigue and other things which are generally quite minor. Infusion-reactions are often prevented by taking tylenol and claritin/benadryl prior to the infusion itself.

"In clinical studies, approximately 25% of patients treated with Entyvio developed an upper respiratory tract infection at some point. These include bronchitis (inflammation of the airways), influenza (flu),
nasopharyngitis (inflammation of the nose and throat) and sinusitis (inflammation of the sinuses)." Entyvio is lowering your body's ability to fight off infections within the GI-tract, so you are going to be more prone to them as a consequence. It's the kind of thing that if you suspect you have an infection needing antibiotics then you should seek out treatment earlier, and sooner. GI-tract infections will develop faster and the symptoms will be worse while on Entyvio. As a general rule with all biologics they say you might, as an example, get an extra flu/cold a year than your normal. So, you're not super prone to them, by any means. Rather it is just an increased risk and something to be cognoscente of, and remain vigilant of while on it.

Entyvio does include a black box warning for PML, despite it never occurring to anyone taking that medication during the clinical trials or since it has been prescribed to patients. Entyvio was specifically designed to not cause PML, as predecessor medications within its class had done by using a different method of action.

Source: www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Risk-management-plan_summary/human/002782/WC500163289.pdf
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7223
Posted 3/9/2020 6:29 AM (GMT -7)
The last part of what you shared is not correct; it does not have any black box warnings. https://www.entyviohcp.com/safety-profile
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greenuc
Regular Member
Joined : Sep 2011
Posts : 283
Posted 3/9/2020 9:31 AM (GMT -7)
Not sure why John keeps posting that Entyvio has a black box warning as I've corrected him in previous threads. It does NOT have a boxed warning.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16389
Posted 3/9/2020 9:38 AM (GMT -7)
Did when it first came out, I'll have to check on the latest.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1414
Posted 3/9/2020 10:04 AM (GMT -7)
I’ve seen that warning in my literature. Again no incidence of cases with entyvio but they put the warning there because it has happened with other biologics and entyvio is new enough that the studies aren’t as long term as others.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7223
Posted 3/9/2020 6:19 PM (GMT -7)
Yes, it's written in the prescribing literature, but it's not a black box warning. Also, I can't find anything that says it had one when it first came out. I don't think it ever did.
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