Rapid reduction

[fitzida]

My sister was diagnosed with PMR at the age of 68 in April 2022 when Atrial fibrillation was also confirmed.

She has reduced her dose to 1mg at present with no problems and has asked me how long she should remain at this dose before slowly tapering off completely. I feel concerned that she has managed to decrease so rapidly in less than two years which must be very unusual. I wonder if anyone knows of similar cases and it's just that she too happens to be particularly lucky?

Many thanks for advice on this matter.

[PMRpro Ambassador]

It is unusual but it does happen, probably more than you think because those patients never feel a need to ask us for information. Did her PMR appear soon after a Covid jab?

[fitzida in reply to PMRpro]

Many thanks for your reply PMRpro. She didn't have a Covid jab in the months prior to diagnosis. As I am at 4mg after 5 years and a couple of flares I imagine it is part of our genetic inheritance. Fingers crossed that, for her, the outcome will prove to be similar to the experience of Liby57 (as below)

[PMRpro Ambassador in reply to fitzida]

I asked because of the speed of her reduction - PMR triggered by the COvid jab seems to be shorter than average.

If anything I think she should slowly taper that 1mg with zero as "new dose" and then be watchful. It isn't unusual for 1mg to be plenty to manage low level disease activity but zero is a step too far - and it can take a few months to build up enough to cause symptoms.

[fitzida in reply to PMRpro]

Will pass this information on. Many thanks

[DorsetLady PMRGCAuk volunteer in reply to fitzida]

As advised by PMRpro, 1mg can being doing a lot in controlling the disease, but 0.5mg and/or zero might bring a big difference. So a slower taper [very slow better] and 1mg to 0.5mg initially. Make sure all okay and then 0.5mg to zero.

[fitzida in reply to DorsetLady]

Thank you for your reply DorsetLady. I shall certainly impress on my sister the importance of a VERY slow taper and warn her about the possible great difference between 1mg and 0.5mg.

[Liby57]

Hi Fitzida

I stopped taking Prednisolone in less than 2 years and have been Pred. free for just over 2 years. If your sister is feeling well she could trying tapering the 1mg and see how she feels.

[fitzida in reply to Liby57]

Morning Liby57, Many thanks for your optimistic reply which I'll pass on to my sister. She is going to be ultra cautious with the tapering anyway and will be encouraged by your experience.

[cranberryt]

She could go from 1mg to 1/2mg first. If that goes well then try 0 after a few weeks at 0.5.

[fitzida in reply to cranberryt]

Thanks cranberryt for your reply. My sister must obviously take it ultra SLOW and do hope she will be successful in coming off pred for good.

[1951grumpa]

Three of my friends had PMR and were off of steroids in less a year or less and no remission. . Years before Covid. Probably Quite unusual. I quite frankly am jealous.

[fitzida in reply to 1951grumpa]

Thank you 1951grumpa, my sister is going to be so pleased when I relay your message.

After 5 years which include a couple of disheartening flares I too am jealous Grr!

[9lives]

hi if your sister is able to cut the 1mg tablet into 4 then she can do an even slower taper. I’m in a similar situation and and I am doing the DSNS reduction but very very slowly. So what I do is repeat each weekly reduction twice. If that makes sense. But I find reducing by 1/4 mg seams to be working for me.

Good luck to your sister 👍 I’m coming up 8 years x

Carole

[fitzida in reply to 9lives]

Morning Carole, Many thanks for your reply. I'm speaking to my sister shortly so I'll read out your reply making sure she's noted down your advice. I wish you all success after 8 years. After 5 years and a couple of flares I'm taking my time reducing down from 4mg.

[9lives in reply to fitzida]

Yes it takes as long as it doesn’t it? Xx I tried to reduce from 1mg a year ago ( after being on 1mg for a year) but ended up going back up to 2mg . So like you I’m taking it a lot slower now. It seems we can’t rush a good thing 🤗