stay on 1 mg or wean off. : I had PMR for 6 years... - PMRGCAuk

PMRGCAuk

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stay on 1 mg or wean off.

Chopin002 profile image
9 Replies

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.???

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Chopin002
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9 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk 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 profile image
Chopin002 in reply toDorsetLady

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

PMRpro profile image
PMRproAmbassador

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 profile image
Chopin002 in reply toPMRpro

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.

Groggrim profile image
Groggrim in reply toChopin002

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 profile image
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 profile image
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 profile image
Chopin002 in reply toColleen1974

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

PMRpro profile image
PMRproAmbassador in reply toChopin002

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.

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