Scared to death

Hi. My name is Amy and I have had Crohn's disease for twenty years (diagnosed). I have had many surgeries, been on all the meds and have just started Entyvio because I had allergic responses to the last two TNG blockers I was on. Humira worked well for me but my dr said she thought I needed it weekly and after two months and an appeal, our insurance company wouldn't approve weekly injections spin had to stop taking it.

I only have 180 cm of small bowel left. We live in Illinois but we have been going to Mayo Clinic for the last five years because the care here isn't good and I don't have faith in my local GIs.

So I had to go to Mayo last week for an MRI and to see my Dr because I was in the middle of a huge flare. I had to be put back on prednisone, just to be able to make the trip because I was going to the bathroom over twenty times per day. After four days on prednisone, that amount of trips was cut in half, which made the drive to Mayo doable.

My Dr at Mayo suggested very highly that I start on Entyvio and immuran and started a taper for my prednsione. I was able to come home and after only three days, was sitting in an infusion chair, receiving Entyvio.

My dr at Mayo told me that I didn't have to worry about PML at all since Entyvio targets the gut and not the brain. She said she felt that Entyvio is safer than even Remicade (which I had an allergic throat swelling reaction to. I was thrilled to hear this and came home determined that this was the right road for me.

However, my experience yesterday at our clinics infusion here was very upsetting! I was the only infusion of any kind scheduled so it was simply my husband and I and our infusion nurse. The first thing she told me was that she had never given this infusion before. Secondly, she couldn't even put it on my medication list because our clinic didn't even have it in their computers yet. Thirdly, she say down next to me and started telling me the risks if Entyvio and PML, describing what my symptoms might be if I did start develop PML. I told her what my Dr at Mayo said and she basically shrugged it off like Mayo had not been truthful with me, pointing out the risk of PML that is mentioned in the pamphlet that came with my Entyvio infusion. I am now scared to death, as we have five kids and I don't know that I made the right decision in taking the drug.

I don't have much bowel to work with and Mayo said I need to have about 18 more cm taken out and also have some strictureplasties done because of narrowing from scar tissue. I am not having obstruction symptoms so I would like to wait on another surgery for now.

Also, our Walgreens was only able to give us give immuran pills (they are starting me at 50 mg for now). They told me yesterday that there is a nationwide shortage and they can't get anymore immuran at tho point in time. I only have one more pill left to take .

Thank you for listening to me blab I and on....I can't sleep because I am so worried

Amy

I think there is very very low risk of PML.

Got this from a press release online

"Although no cases of PML have been observed in ENTYVIO clinical trials, JC virus infection resulting in progressive multifocal leukoencephalopathy (PML) and death has occurred in patients treated with another integrin receptor antagonist. A risk of PML cannot be ruled out. Monitor patients for any new or worsening neurological signs or symptoms. If PML is suspected, withhold dosing with ENTYVIO and refer to a neurologist; if confirmed, discontinue ENTYVIO dosing permanently."

I like to think of Entyvio as the safer version of Tysabri.    Tysabri had a high risk of PML and is a very similar drug. I would not worry.  I'm going for my 3 rd dose of Entyvio next week.  The nurse was just reading you the required pamphlet.  Heck read the pamphlet for any drug and it will scare the crap out of you. Do some research online and you will find the risk is not high for PML on this drug

Don't be scared, Amy. You're not going to die of PML. Entyvio suffers from guilt by association. It has a similar mechanism of action to Tysabri, which does carry a PML risk but still has plenty of people taking it because it's worth the risk to them. Entyvio targets the alpha 4 beta 7 integrin, which is found only in the intestines. Tysabri targets the more general alpha 4 integrin, which includes all the betas, even ones in the central nervous system. This is why Tysabri can treat MS and Entyvio can't. It's also why Tysabri can trigger PML and Entyvio theoretically can't.

I said "theoretically" because it can't be proven that it can't trigger PML. It hasn't so far triggered it in anybody taking it. It also can't be proven that Entyvio doesn't cause people to grow a second head. It hasn't so far, but, hey, anything's possible. The infusion nurse mentioned it because it's on the prescribing label. It's on the prescribing label because the government made them put it on there. They did that because some FDA bureaucrats brought up the Tysabri PML in their December 2013 advisory meeting and were all freaked out about it. You can read all about it online. If you search for it, the minutes of the meeting are out there. I'm sure the infusion nurse did not.

So that's the technical reasoning for everything. I've been on Entyvio for 6 weeks and I'm fine - no PML and no second head. All indications so far are this is a safe drug. Is it possible something scary will come out about after enough people have taken it? Sure. But fighting this disease always requires balancing the risks of not treating it properly and the risks of the medications. In the meantime, don't lose sleep about Entyvio and PML. You're doing the right thing. Continue taking it.

I know it has been a few years since your post, but are you still on Entyvio? I have been on it for almost a year and just recently found out I test positive for the JC Virus. Now I don't know whether to continue on it or not. My GI doctor seems to think that the risk of PML is not there.