I want to talk about Briumvi & my recovery from it.
You know I love Briumvi. It fixes up my MS symptoms like nothing else ever has, and seems to be successful at preventing more MS damage.

BUT. MCAS does not like Briumvi. It flares as soon as Briumvi hits my system. It's usual to prep with steroids and a single benadryl. I prep with double the steroid amount, two benadryl, a cetirizine, a fexofenadine, a famotidine, azelastine nasal spray, and allergy eye drops. Then I take home a 5 day course of steroids. If we don't do this, I will be hospitalized.

Recovery is a combination of fatigue from getting the procedure itself, recovery from the MCAS flare the getting med put me into, and recovery from all the various things that flared while in the space Briumvi had ceased working because there was little left in my system.

This time according to my labwork I also have a massive infecton right now. It could be any of the infections Spouse had or a brand new one for me.

I have to sleep 16-20 hours a day right now and this can go on for 2 full weeks. Briumvi recovery is hard. It isn't pleasant. I am very ill.

#Briumvi #MultipleSclerosis #MCAS

Hopefully #1 will be all over by, say, 4pm tomorrow. Get that Briumvi in me!

#Briumvi #MultipleSclerosis

Here's where we are today. United Healthcare has refused to pay for my initial Briumvi treatment that took place on May 23, 2023. In six days it will be one year without payment.

I sent this:

[I have questions for and about the medical team doing this review.

I have been patient for a very long time. As one year without payment approaches I am becoming less happy and less willing to keep this private.]

#UHC #UnitedHealthcare #Briumvi #MultipleSclerosis

Also, ab morgen keine Tabletten mehr. Gibt es hier wen mit Interesse an meinen #Ponvory Resten. Sie fliegen sonst weg, wäre irgendwie schade drum.

In 3 Wochen dann wird entschieden für #Ocrevus #Kesimpta oder #Briumvi. Gibt es hier Menschen mit Erfahrungen dazu? Allgemeines Infomaterial habe ich und kann auch dann nochmal alles nachfragen. Da antwortet dann nur eben eine Ärztin und kein Patienty.

Theoretisch steht auch Tysabri zur Auswahl, aber nein danke.

It's Briumvi day.

My neurologist's office, where I will be given this immunosuppressive medication, has long since stopped masking.

#Covid19 #LongCovid #MultipleSclerosis #Briumvi

About that Briumvi...

I just bed-danced for two songs, a thing I have not been able to do for probably close to a decade. My muscles got sore, but my body did not give out. I'm going to try not to overdo it, but this is so exciting.

https://youtu.be/El1kgCqD7Xk

#MultipleSclerosis
#Briumvi

I had a lot of IV steroids today. I'm tired and I hurt but there is no way I'm sleeping. I've got that Tigger energy.

#MultipleSclerosis #Briumvi

I'm starting my new MS med on Wednesday. It's going to be 5+ hours, so I'm nervous. As my Neuro said, that's going to be difficult for me. There's an office recliner for IVs, so I'm hoping I get it (already asked), otherwise, I'm going to be in huge pain all day.

I'm packing drinks and snacks, which is going to require mask removal. I'm not thrilled about that part. I'll use the straw seal on an N95 for the drinking.

I think I'm also bringing a light blanket and a pillow. And a spare charger with wall plug, phone, tablet (for comics), and my kindle. If I can find earbuds or if I'm in the room alone as usual, I can watch tv.

Cannabis is going to be an issue. I'll have to start edibles early and keep going.

#Briumvi #MultipleSclerosis

https://multiplesclerosisnewstoday.com/news-posts/2022/12/12/briumvi-ublituximab-approved-relapsing-ms-us/

#MultipleSclerosis #Briumvi