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Posted 2/27/2022 8:56 PM (GMT -5)
https://www.verywellhealth.com/ibd-entyvio-immune-system-1123897
Just came across this while having my entyvio infusion and almost passed out from anxiety! Honestly don’t think I can do this anymore
Posted 2/27/2022 9:12 PM (GMT -5)

Theanxiousaries said...
https://www.verywellhealth.com/ibd-entyvio-immune-system-1123897
Just came across this while having my entyvio infusion and almost passed out from anxiety! Honestly don’t think I can do this anymore

Why? It says in the opening paragraph that PML has never been observed in Entyvio, only its cousin.

Of all the biologics I tried and failed, Entyvio was the best. Aside from feeling bad a few days after the infusion, it gave me a lot of my life back. Too bad it wore off because I would keep taking it.
Posted 2/27/2022 10:26 PM (GMT -5)

VanJordan said...

Theanxiousaries said...
https://www.verywellhealth.com/ibd-entyvio-immune-system-1123897
Just came across this while having my entyvio infusion and almost passed out from anxiety! Honestly don’t think I can do this anymore

Why? It says in the opening paragraph that PML has never been observed in Entyvio, only its cousin.

Of all the biologics I tried and failed, Entyvio was the best. Aside from feeling bad a few days after the infusion, it gave me a lot of my life back. Too bad it wore off because I would keep taking it.


Idk because my anxiety is out of control and I feel like the worst will happen for me. I made it to my Drs where they called an Ambulance.
Posted 2/28/2022 6:14 AM (GMT -5)
To the original poster,

I'm very sorry you are going through this especially with your anxiety. You have Health Anxiety and you are exhibiting clear symptoms of such. You need to talk to your doctor about this,

If you search on the internet you will find all these awful things about the diseases and the drugs. There is no way out of this and continually researching this is just perpetuating your anxiety and driving the fear and creating a vicious cycle for you. You post on here on these issues as a survival mechanism in order to try and reduce the anxiety that has built up for you. It is your way of trying to cope. But in reality none of us can actually address these issues for you.

My own view is that you need to break the cycle. You need to stop googling and stop researching. You do it to try and find reassurance. You won't. It might give you temporary relief but the monster will rise again. Sites like HW have their place but they are not good places for people with high anxiety. I think you should take a break from both googling and HW. HW is great if it can offer you support and comfort but right now it cannot as your anxiety is too intense.

Find some other way of channeling the energy inside of you. But stay away from Dr. Google at all costs.

D
Posted 2/28/2022 12:28 PM (GMT -5)
That freaked me out too, but it's true that the chance of getting it is tiny. Sorry for the invalidating responses you received above (one even telling you to stay away from HW!).

You mentioned an ambulance. Are you ok?
Posted 2/28/2022 4:50 PM (GMT -5)
PML has never been seen in connection with entyvio , which really is the safest biologic (IMO). They disclose that only because of legalities and because PML does have a slight incidence with some of the other biologics so they all disclose that there’s a slight chance. There’s also a slightly bigger chance that you could die from untreated UC.

I know your anxiety has you on heightened alert to everything, and in my experience, the best way to break that cycle is with medication. Did you ever get on antidepressants? If not you could benefit from a benzodiazepine like Xanax.
Posted 2/28/2022 6:07 PM (GMT -5)
I appreciate honest replies and those more compassionate. I know my anxiety is out of control. I just wish I knew how to stop it. I’ve had anxiety since I was 9 when my father died and again it came back with a vengeance when my Mother died. I have always had an overwhelming fear of death. I’ve tried so many things to make peace with death and I’m still trying
Posted 2/28/2022 6:32 PM (GMT -5)
That's completely understandable, especially given all you've been through. I hope you can find some relaxing or distracting activities to take your mind off of it this week, even if only briefly.
Posted 3/1/2022 9:39 PM (GMT -5)
A short history lesson on the meds Natalizumab and vedolizumab/entyvio. The first medicine of this class, Natalizumab, had low odds of causing PML of 7 in 10,000 (or 0.07 percent). Inversely, 99.92 percent of patients did NOT get PML. Natalizumab blocks both MADCAM 1 and 2 within our bodies. Further research found that blocking MADCAM 2 was the reason for the low PML odds as MADCAM2 affects the brain. MADCAM1 is gut specific immune suppression.

Entyvio/vedolizumab was specifically designed to not cause PML as it blocks only MADCAM 1. It's no surprise there have been zero PML cases with entyvio, as it was engineered to not cause PML. The clinical trials and reporting since release to market back this up, it hasn't happened. As these two meds vedolizumab and Natalizumab are of the same class of MADCAM blocking meds, the FDA rules state they both must have the black box warning about PML.

Natalizumab is still in use for MS, but not used at all for UC.
Posted 3/2/2022 2:40 AM (GMT -5)

iPoop said...
A short history lesson on the meds Natalizumab and vedolizumab/entyvio. The first medicine of this class, Natalizumab, had low odds of causing PML of 7 in 10,000 (or 0.07 percent). Inversely, 99.92 percent of patients did NOT get PML. Natalizumab blocks both MADCAM 1 and 2 within our bodies. Further research found that blocking MADCAM 2 was the reason for the low PML odds as MADCAM2 affects the brain. MADCAM1 is gut specific immune suppression.

Entyvio/vedolizumab was specifically designed to not cause PML as it blocks only MADCAM 1. It's no surprise there have been zero PML cases with entyvio, as it was engineered to not cause PML. The clinical trials and reporting since release to market back this up, it hasn't happened. As these two meds vedolizumab and Natalizumab are of the same class of MADCAM blocking meds, the FDA rules state they both must have the black box warning about PML.

Natalizumab is still in use for MS, but not used at all for UC.

This has given me great comfort. I was sitting at the infusion centre waiting my 2hrs after my infusion and decided to start googling. I almost passed out when I came across the article on PML. By the time I’d driven out to where I live, stopping at my Drs surgery I was in a full blown panic attack, certain I was suffering PML because I missed the arm rest trying to get out of the car in a panic and fell on my face. My Dr convinced I’d suffered an allergic reaction because he hadn’t seen me without a mask since the start of covid and I had moon face from the prednisone so he insisted on an antihistamine injection. I tried to tell him that’s just how my face looks now but grateful he wasn’t taking any chances. Thankfully the nurse helped me control my breathing down enough so it became pretty obvious it was anxiety by the time the ambulance came. I have been contemplating stopping entyvio because I didn’t want to live in fear of this. Honestly it made me question surgery all over again so I Thankyou for your reply
Posted 3/2/2022 4:04 AM (GMT -5)
I am sorry you are suffering like this. It's very hard not to Google things. My GI threw a fit because I would work myself up into such a state. I'd have so many questions... And I still can't stop looking. (9 years now) But now I post in here and you all talk me down.

It's difficult. The health issues, losing both parents. It takes a toll on you. I finally went to a counselor. I don't take any medications for it. I discovered coping mechanisms and now reach out to support groups and my family help enough to get me thru. But occasionally I still will have panic attacks. It's the unknown, not having control over your own body and this disease with these medications. It's all frightening. Add Covid and the loss of the human touch/contact...

I don't know if you are religious or not. I was as a child, not so much as an adult, then I coded on 2 different surgeries and I reached out to a religious leader along with a counselor. They helped me. There were medications offered, I declined and went down the hard road... But that was the right path for me.

Personally, I would not give up on the medication. I'd reach out, get some meds to get me thru this difficult time, talk to a counselor and/or religious leader if you want... And try that route. Once your health improves...or starts to..it changes everything. Everything.

Your in my thoughts,
Clo
Posted 3/2/2022 12:15 PM (GMT -5)
It gets easier the longer you're on a medicine. At least it did for me. Surgery has its own risks.
Posted 3/2/2022 7:00 PM (GMT -5)
How's it going?

Thinking of you and hoping today is a better day.

Clo
Posted 3/7/2022 1:45 AM (GMT -5)
Sorry you’ve been going through such a tough time. Did you ever contact the Psych I told you about who works with IBD patients?Also someone mentioned Xanax. I’d never tried it before but was having intense health anxiety in November and .5mg once a day for three weeks for me the world of good. Sending you a hug from down South. You have my number if you need a friend to talk to. Tracy smile
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