Just Started Actemra

I have been on Actemra infusion
For 8 months It has helped.
No problems. Theresa

How long has anyone been on IV actemra ..I have Ben on it for 6 months
Wondering how long one has to stay on it. Off Predisone. Theresa

I started with Actemra injections on January 1st, 2019. It took me over a year to taper off Prednisone the first time.

I was switched to monthly infusions about 4 years ago which corresponded to my last dose of Prednisone. I have never relapsed while on Actemra but PMR symptoms gradually return and my inflammation markers increase when I don't do an infusion.

I needed 15 mg of Prednisone again when there was no Actemra supply during Covid. Being off Actemra for 6 months was tough. After Actemra was restarted I easily tapered off Prednisone again. It only took me one month to taper off Prednisone the second time

I start Acterna infusion next Monday. Diagnosed with GCA in May. Was immediately put on 40mg of Prednisone and was down to 10mg waiting to start Acterma when CT scan at Mayo Clinic found clots on my lungs that I was clueless about. No symptoms and I exercise vigorously six days a week .
So now I’m on Eliquis too after an overnight stay in hospital .
They also raised my Prednisone back to 20 mg and gave me a slower taper.
Now I see a Hematolgist next week about the clot cause on my lungs.
I have two questions for anyone taking Acterma
(1) do you have to fast before infusion
(2) how long after infusion do they tell you not to do anything strenuous

1) I have never been told to fast before any Actemra infusion.

2) I have never had any activity restrictions after any Actemra infusion.

I have no restrictions at all with Actemra except maybe Actemra being held for any infection. There are frequent monitoring labs that should be done when Actemra is initiated but those labs aren't done very often anymore.
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I had a pulmonary embolism that was called extensive, bilateral, multiple and "unprovoked" when I was on Prednisone. I wasn't completely clueless because I did admit to being slightly more short of breath than usual. Otherwise I thought I could go home.

Instead of going home, I was sent to the intensive care unit for 2 days. I was seen by a hematologist, a pulmonologist and other -ologists but I wasn't sure who they were. Nobody could explain with certainty what happened but "prednisone" was frequently mentioned. A "cascade of blood related events" was the determination of the hematologist but no clotting abnormalities were ever found.

"Warfarin for life" was initiated to prevent any recurrence of another pulmonary embolism. At the time there was no end in sight to my long term Prednisone use.

Maybe it was just a coincidence but warfarin was discontinued when Actemra allowed me to taper off Prednisone. The risk of me having another pulmonary embolism was less. My PCP was reluctant to stop warfarin but the PE incident was revisited when Eliquis was being considered. Now I'm off anticoagulants for the first time in more than 10 years.
https://www.sciencedirect.com/science/article/abs/pii/S0049384816300378

Very similar. Thank you. Only difference I was never short of breath or had any symptoms. The CT scan that showed the Pulminary Embolism was done at 8:30AM and I was sitting in Starbucks in Mayo Clinic waiting for 1:00PM RA doctor appointment when they called me and told me to go right to ER. Had my appointment been later I would have been at LA Fitness working out.
My guess is caused by Prednisone, which they raised back up from 10 mg to 20 mg with slower taper planned.
Have Hematology appointment on 8/20 but my guess is caused by Prednisone also because I have no clotting history. They put me on Eloquis and told me Hematologist can do more tests to determine how long I need to stay on it.
Im back to exercising vigorously with no effects.
Ive postponed scheduled flu shot. Told I can get it while on Acterma and that its a little too early. I ususally get in mid September.

I was in a bank when someone asked me if I was okay. I was short of breath but that wasn't anything unusual. The person at the bank said there was a quick care place next door and suggested I go there. I went there but I wasn't sure why except maybe to get an EKG. I didn't have any chest pain or anything too exciting.

Things got exciting rather quickly. The quick care place wasn't equipped for an EKG so I wanted to leave. The doctor said she wasn't going to let me leave. I wasn't belligerent but I thought she was crazy when she told me an ambulance would take me to the emergency room. That was when I told her I wasn't going on the ambulance because I was going home. She wouldn't have been able to stop me but I acquiesced because I wasn't able to run away and I wasn't going to fight her. It was truly a "fight or flight" response but I couldn't do either one.

The ER did a chest CT and before long I was in intensive care. I was more worried about what was in the oven at home. The ER people promised to call my wife so she could turn off the oven. I was taken to the intensive care unit.

I do not have to fast for Actemra..Only thing they ask is if I will have sugery.
Can do activity afterwards Trina

1. No
2. No recommendation given. Though I decided on my own to lighten up for a couple of days afterward.