JC Virus test before starting Entyvio?

I'm getting ready to start Entyvio, and while researching it learned that the JC virus is quite common, in 70 to 90% of humans. Of course the clinical trials for Entyvio tell us not to worry, as PML risk occurred with Tysabri and this mechanism of action is different. I don't really understand the science behind it. Also, my doctor said it is not standard practice to test for it before beginning Entyvio because the virus is so common, etc.

If you were going to start Entyvio, would you insist on getting the JC virus test first and, if positive, would you be less inclined to take Entyvio?

I need a reality check, since I'm unsure. And you know how much harder it is to advocate for ourselves when feeling so sick.... This is my last UC drug option at this point.... Can someone offer me guidance?

my friend just started entyvio and he tested positive for the JC virus. at this point, he doesn't really have any options left anyway. he's done all the biologics and has a permanent ostomy. the crohn's is attacking his small intestine and he is steroid dependent.

if it were me and i was in his position, you bet i'd still try it.

Thing is, Entyvio carries as much risk for PML as aspirin or advil. There is NO MECHANISTIC rational for the link. They only mention it because another drug in a similar class but focusing on a different molecule had the risk.

My son has Crohns and has been on methotrexate for a while after developing a fistula and peri-anal abscess. Over the past 18 months his Fecal Calprotectin and CRP have been increasing to all time highs. He just texted me from college that he has some blood in his stools for the first time since his diagnosis at age 13. He is now 18. We know it is time to escalate to biologics but fear Humira and Remicade because he is in the group that has the largest risk for hepato-splenic T-cell lymphoma. We are going to his first visit with an adult GI doc who is his pediatric docs counterpart at our as the director of the university inflammatory bowel disease clinic in a week when he returns from his first semster of college. I am thinking that Entyvio may be a better thing for him to try because although there may be a small risk of PML, it does seem very unlikely given the mechanism of action specific to the gut and at least he isn't in the group of highest risk for the very scary side effects of these meds.

His disease was limited to his terminal ileum and he has not had diarrhea with his illness...he was diagnosed due to lack of growth. He never had any blood in his stool until now so perhaps it is in his colon now as well and that is why his numbers are high even though his MRI and Small Bowel follow throughs looked the same or better.

Any thoughts from those of you who understand the med better would be welcome. He did get approved for Humira but we didn't start it. I am also curious about how likely it is he will get approval.

Thanks everyone.

Yes, it's only when azathioprine/imuran or 6mp is also involved that brings with it the risk.

Apparently there have been a few cases of HSTCL in women, in older patients, and in patients taking anti-TNFs as monotherapy.

https://www.ncbi.nlm.nih.gov/pubmed/21941193

3BoyMama, you say there have been 82 & 17 cases of HSTCL from Remicade & Humira from the last five years? That sounds way higher than the numbers I've heard - but the numbers I've heard might be IBD patients only, while your numbers include all uses of Remicade & Humira.

In any case, you're right - the risk is there. It's small, but it's an awful disease to risk getting at all, so I understand your concerns.

There's not a lot of head-to-head data with anti-TNFs versus Entyvio, but the majority of people who study these meds tend to think the anti-TNFs are most likely to be most effective, especially for fistulizing disease.

But were they concurrently on immunomodulators?

K, share what you find.

Also please take the odds into account. How many people are cumulatively taking humira today versus those who actually got HSTCL. I bet you'll find your odds are higher of getting struck by lightning, abducted by aliens, and seeing the real elvis Presley within the same day (and wow what a day that'd be ) than getting HSTCL. There's really, really small odds of lots of terrible things yet we leave our house, get in an automobile and live our lives without worries. The benefit far outweighs that tiny, tiny risk inherent in so many things. I'd try and set aside the human nature worry of the worst will happen to me, and focus more on the benefit of having your uc under control and the quality of life of a possible remission.

With the way some people drive on the roads, I feel like I'm in far more danger of dying in a car crash than I am from a fatal form of lymphoma caused specifically by medication, but it doesn't stop me from driving anyway. Just baffles me the obscure things people choose to worry about sometimes.

I didn't even have you in mind when I wrote my post. I'm sorry, but people are notoriously poor at assessing statistical risks. I try to contain my worrying about what's likely to actually happen in the near future, not freak out about getting lymphoma from Remicade. Your case is different, I guess, given a child is involved and the other stuff, but in general I get tired of seeing healthy 20-somethings freak out about the possibility of having cancer (when the odds are like 1 in a million) and not freaking out about what right-ring politicians are soon going to be doing to their world.

*gets off hobby horse*. I'll get my coat.

What is your son's risk if you don't start a biologic and leave his IBD as it is? As that's the other side of the coin. Having untreated inflammation long term can increase cancer odds, cause his IBD to spread and get more severe plus have a very negative impact on quality of life.

Biologics either work (mid 60 percent odds) or don't. I had a good 2.5 year remission on remicade and am currently going through a minor flare.

Pros Remicade is the first approved uc biologic with the longest track record and safety history, response in 4-6 weeks, slightly higher response rate than other biologics, and 8 weeks between IV infusions (in maintenance). Cons more expensive than humira, Remicade is an IV hospital-outpatient-procedure so higher copays and deductibles, 2-3 hour IV infusion, 25 percent mouse protein so a higher risk of antibody formation, and systematic immune suppression.

Pros Humira cheapest of biologics, convenient at-home self injection, response in 4-6 weeks, longer safety profile than entyvio, and 100 percent human protein. Cons humira injects can hurt, more frequent doses every couple weeks, humira pens must stay refrigerated during travel, and systematic immune suppression.

Pros Entyvio gut-site-specific immune suppression meaning decreased risk of body wide infections and side effects, 30 minute IV infusion, and 100 percent human protein. Cons entyvio is very slow working (12-14 weeks for response), new so double the cost of remicade, an IV infusion with hospital-outpatient fees, and it's a new medication so a very limited history and safety profile.

Thanks for all of that insight...that will help us in making this decision and give us some more insightful questions to ask his new doctor. My son was on growth hormone injections daily for 2.5 years that was also delivered in a pen injector and we had to do the specialty pharmacy delivery. We left the pen out for 30 minutes to ease the pain and he iced. (Crohns inhibited his IGF-1 that makes growth hormone work- his only symptom for diagnosis was that he fell off the growth curve drastically over 2 years) We did them from age 13 to age 15.5 so Humira will be familiar that way but I wish we could just draw it up without the preservatives because that is what the doctor said causes most of the pain with all pen injectors. I wonder if Humira has that option since either I will give him the shots or a nurse in the school health service. I know his pedi GI preferred Remi because he felt the better data was due to compliance since it is infused. His methotrexate shots didn't hurt him at all since it was a regular injection and not a pen. I think he will be able to make an informed decision about Remi v Humira if it comes to that since he really understands the pen injector scene. Thanks again...all great stuff I will add to our list!