Entyvio Safety, experiences?

Welcome to the forum. Your case is a bit unique, but here's some text I have from our resources section on Entyvio and safety.

Entyvio risks versus benefits

We're all initially concerned when considering a new class of medications, myself included. What helped me was taking a look at the actual odds of risks versus benefits. The majority of UC patients who take entyvio do not experience side effects from it as the benefit far outweighs the risk of taking it. 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

Have you checked with your oncology Dr? Entyvio is gut-specific but it seems to be causing me sinus - related headaches. But maybe it's more of a dehydration issue. Entyvio has put me in symtomatic remission with no visual inflammation although there is still a little lingering microscopic active colitis. But I would be worried too if I was in your shoes. I would definitely have a long talk with an oncology Dr.

I'd say entyvio is your best bet, safety wise and all.

A polyp NOT = a lymphoma. I am wondering if you are confusing terms. A polyp is often within the intestine, and is a form of colorectal cancer not a lymphoma.

What do they recommend for future colorectal cancer screenings now that a suspicious colon polyp was biopsied? Are they monitoring you on a more frequent basis and, if so, how often?

Thanks wasn't aware of this. I'll give it a read.

I took Entyvio for the better part of a year and had some of the same fears. In addition to UC, I have a genetic disease that increases my odds of developing certain types of cancers. So far, I have had 3 tumors, all benign, luckily. But I've lost a kidney and half of my bladder and was very nervous about Entyvio.

I'm not going to lie. My loading doses were hellish. The infusions triggered migraines, severe joint pain, and serious fatigue (as in, I literally fell asleep sitting up at my desk the next day). All of the side effects except the headaches eased as time went on. After several trips to a migraine specialist and trying various medications to deal it, I had one so severe that I ended up in the ER. There hadn't been a noticeable improvement on the Entyvio in the 8 months I was on it and my doctor felt that if it helped, I would know by now. I stopped taking it.

I would urge you to have conversations with your doctors about side effects. Don't try to tough them out when there might be medications to help. I found that requesting IV fluids and taking Benedryl before an infusion made side effects a little milder. Also, they might decrease as time goes on.

Good luck. I hope it's more effective for you than it was for me.