stay on 1 mg or wean off.

[Chopin002]

I had PMR for 6 years, GCA for 4. Started 2018. Just getting remission from those when hit with Graves’ disease and AFib. Thyroid has normalized with medication but still dealing with AFIb. Gone from 1 med to a total of 5. Should I worry about taking 1 mg pred for well over a year or should I start the DSNS again to at least be done with one drug. The pills are so small to cut. I would probably do a quarter at a time but with the remission maybe a half is ok.???

[DorsetLady PMRGCAuk volunteer]

To be honest, I wouldn’t be stressing about being on 1mg of Pred… when you feel able then maybe try half a mg - but no great rush…

[Chopin002 in reply to DorsetLady]

Ok, thanks. I think my rheumy feels the same.

[PMRpro Ambassador]

Sometimes it's like a talisman! Prof Dasgupta told us he sometimes keeps patients on 2-3mg longterm to reduce the risk of relapses. If 1mg does it for you - so much the better.

I had a real uptick in my a/fib after the bivalent Covid jab just over 2 years ago and they finally offered me an ablation which was done January last year. Apart from a slight stirring after a bisphosphonate infusion which settled after a few months and wasn't repeated with this years - almost no a/fib! Still on the medications but I'll accept that.

[Chopin002 in reply to PMRpro]

Thanks, I’m hoping to get on the ablation list here. It’s long. I may be best to stay on the 1 for life. Got enough problems.

[Hidden in reply to Chopin002]

Hello, as PMRpro has mentioned above, my GP told me his aim is for me to be possibly on a low dose of 2mg long term, when I get there. Still got a bit of a way to go.

[Wizards]

Hi Canada from another Canadian. I've been off for 2 yrs now after 8 yrs with pmr, and I can honestly say your so close to the end if it is the end, take it slow.

I used the Dead Slow Method with breaks in between. What's the rush now.

Best of luck

[Colleen1974]

I made it to 1.5 and decided to try 1mg. It was too much pain. Went back to 2mg and will hang out here for a while. There is no straight path is there?

[Chopin002 in reply to Colleen1974]

I’m starting to think staying on 1 for life is better than a flare. Good luck.

[PMRpro Ambassador in reply to Chopin002]

Depeds on your sort of PMR - sometimes the disease activity ramps up and if 1mg isn't enough, then you still get symptoms.

If you do that last 1mg really slowly you can be fairly confident after a few months that it really has gone away.