Covid 19 and PSa

Anyone else deal with getting COVID-19 after their renflexis infusion? How did you get through it and what may help.

That’s a really interesting question. At Ben’s Friends we have a general rule that Covid discussions (especially those about vaccination) are out of bounds. But questions directly related to “our” disease and Covid are fine.

So just to clarify, Jojobug, what exactly do you mean when you say “getting Covid-19”? Do you mean testing positive for the virus and then what do you do? I guess the simple answer is “You do exactly what your doctor tells you to do.”


PS If you are asking about vaccination, please read this, which was published at the beginning of this year by the Executive Directors:

New members arrive at Ben’s Friends with lots of questions, as well as a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines.

The advice we give here is friend-to-friend. It’s not evidence-based medical advice, even if many of us see ourselves as local experts in our own conditions. Opinions and advice about Covid vaccines is waaaay outside our area of expertise!

When we have questions about vaccines (and trust us, we all do!) we depend on the expert scientists and doctors who have dedicated their careers to the study of their specialty. Then we turn to the doctors who know us best. That’s what we advise you to do.

Look to Drs. Tony Fauci, Supriya Sharma, and Jenny Harries and their learned public health colleagues around the globe for the big picture. Then turn to the doctors closer to home who know you well, for the best personal advice that you can get. Because it IS the best.

Yes, we all have opinions, and gut feelings too. But it would be unfair for us to allow your decision to be influenced by our (or anyone else’s) gut feeling, hunch or rumour.

So keep an eye on what the experts say, and when it comes time to decide what to do, ask your doctor. When it comes to a Covid question related to your rare condition, run it by your specialist. When I did, here was her answer: “I’d rather you take your chances with the vaccine than with the disease.”

I’m going with that, and rolling up my sleeve asap. Asking for opinions in a group of lay people is only going to confuse matters, and goodness knows the world is confusing enough as it is. Ask the docs.



So no discussions about Covid vaccination here!

Thanks you. Not asking about vaccination just curious if anyone has had it that has PSA. Experience strength and hope

Yes, I know someone who I think got it before he was vaccinated. But whether he will see this discussion and speak up or not is another issue. :laughing:

I have a question too, but mine is about something that happened to me after on of my V****** shots. Don’t dare ask it in case I set a moderator off.

I had covid last November, obviously before a vaccine was available. I’m on a biologic, but. . . I was actually off it temporarily because I had just had surgery to remove hardware from my foot. That was from a non traumatic, non healing fracture. One big barrel of laughs.

Anyway, I was pretty sick but managed at home. When it hit my chest and I was having trouble breathing I was put on steroids and antibiotics. Not what I wanted while I was recovering from surgery, but breathing is more important.

I was sick for about ten days, and it took a few months for me to get back near my baseline for health. My heart rate would spike over virtually nothing, I was breathless over nothing, etc. No long covid, except I still don’t have my full sense of smell back.

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Thank goodness you’ve recovered as well as you have, Stoney.

What about your foot? Are you comfortable walking now?

Thankfully, yes! (Mostly lol)

I’m walking, and even hiking. But I need to balance out any longer treks with shorter and/or easier ones. My feet are problematic, to put it mildly. The newest fun has been a stubborn ganglion cyst that likes to press directly on a nerve. It’s been drained, but isn’t awesome. I’m letting my mom try out the ganglion cyst removal surgery on HER foot first.

Thanks for sharing this publication, it is well written and thought out. Gives me some good ideas on developing similar protocol regarding V******* for a few boards that I sit on. And, watch your back…those moderators are everywhere! :slight_smile: :joy: :wink:

Thanks for sharing your experience. It’s been a month and I still have covid. My fever is beginning to subside but then comes back. Dr. Said after 3 days no fever tylenol etc then I won’t be contagious. I’m thinking the reason it’s lasting so long is because I got my infusion, (therefore no immune system),and got covid about same time. Guess I am just in it for the long haul. Most of all I would like the insomnia and spaciness to go away of course with everything else. Have a beeautiful kind of day:)


That was 12 days ago, @Jojobug . How are you doing now? I hope you’re recovering!

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