Anyone with PMR have experience with 4th COVID vax jab?

What is Evusheld and why did you get it. Haven’t heard of that?

I think each person has to figure out how to taper. After a lot of trial runs here’s what is working for me. It takes me about 3 weeks to ramp down 1 mg. Alternate new lower dose (eg 16mg) with old dose (17mg) for a week. Then 2 days new dose and 1 day old dose (just one time). The 2 weeks on new dose 16mg).

Then start the cycle with 1mg lower. I’m going to 14mg this weekend, which is the fir time in 5 months I’ll be below 15mg!!!

Highest is 5. Still there

This is from Dorset Lady (PMRGCAuk group at HealthUnlocked)...the best resource I've found:

"Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

If inflammation has been allowed to build up significantly a staged reduction may be required.

Example - if you flare after dropping from 9-8 mg, but were okay at 9mg -

Go to 14mg .......get symptoms under control - then drop back to 10mg .....and continue tapering schedule.

If you’re unsure, then drop to 12mg, stay a week then drop to 10mg......

Note that if you regularly flare, it does seem to get progressively more difficult to get subsequent flares under control. So , ideally, try not to get in that situation if possible.

If that’s happening to you, you need to reconsider your tapering regime.....not always easy if set by your doctor. But remember, you are not reducing relentlessly to zero, you are trying to find the LOWEST dose that controls your symptoms."

My PMR started a week after my J and J vaccine. I will never get another vaccine of any type.
I though I saw an article that Pfizer is now listing PMR as a symptom of their vaxx? True?

I’ve been on prednisone for 3 months. Down to 12.5 right now. My primary care doc. said not to get 4th shot. I feel I got PMR after my first booster. He concurs since he’s seen it in other patients of his. So I do my best to avoid crowds and or mask up.

Long term low doses of Prednisone reduce your ability to make and use antibodies. So in a sense we are immunocompromised after using long term prednisone. Evusheld is a monoclonal antibody that can be given in two shots in an infusion center that provides the patient with antibodies to Covid. Lasts maybe 6 months. It just brings you up to the level of a person with covid vaccinations and boosters. You have a chance of being protected from serious consequences. Not totally from infection.

Highest dose 35 mg
Lowest dose 15mg

These doses were strictly to decrease a flare

I have had no covid vaccines --- none --- PMR 1st round started end of September 2021 -- I had the temple artery biopsy / negative --- RA specialist put me on Methotrexate 2.5 mg / 8 pills one day a week while reducing prednisone. My prednisone regiment at the beginning was 40 mg when PMR first started -- January 2022, I started reducing pred dosage due to sugar levels out the roof --- as of 5/1/22, I was at 5 mg of prednisone and I have stopped the prednisone -- I couldn't handle the no energy - wanting to sleep and foggy / cloudy thinking ----- still on Methotrexate but I'm done with prednisone --- If PMR flares up again then I'll go back on prednisone ------ As of 5/8/22 --- ENERGY coming back ---- foggy and cloudy thinking has cleared up ------ So far ----- so good !!!

Hi, new to this site (but not new to PMR) and saw the questions about the Covid Vaccine. I also have Crohn's and my husband has Thyroid auto immune disease and we have had the Moderna series and two boosters, to date. Since the PMR predated the vaccine, I am sure that it wasn't responsible. We have had only expected side effects and the piece of mind is well worth it. We will take a third booster (hopefully for varients) should it become available. I reccommend that everyone take it who can. I am 75 and didn't like my odds with this disease.

I would also be interested in hearing about others experience using low dose naltrexone (LDN). It helps me at least not hurt when I don't move. Whereas, before I hurt all the time, even when I was trying to sleep. Has it helped anyone else?