Staying at a low dose of prednisolone for a few months to avoid flare.

[Mack100]

I have read on here that some rheumatologists favour keeping PMR patients on a low dose of 2 or 3 mg daily for a few months in order to avoid flares before continuing to taper to a lower dose. I am unable to find any references to this plan. I would like to quote them to my GP as I want to stay on such a maintenance dose now that I have reached 3mg and would like to cite any such reference. I'd be grateful for any guidance.

[PMRpro Ambassador]

It was a statement made by Prof Dasgupta during a webinar which he did for members about 18 months ago. Not published as far as I know.

I completely agree with the sentiment - but I think you can get lower than that before sticking. If you reduce that last few mg very very slowly - even the step to zero - and are vigilant and do not assume that any returning symptoms are NOT PMR, 1mg is more than possible. Even 1/2mg can be enough to keep the inflammation under control for some people.

[Mack100 in reply to PMRpro]

Thanks

[piglette in reply to PMRpro]

I believe Rod Hughes made a similar comment staying on around 5mg to limit problems from the adrenal glands.

[PMRpro Ambassador in reply to piglette]

His is more hanging around at 5mg to let the body catch up. I think Dasgupta's is a tacit admission that PMR lasts longer than he and his colleagues said ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

…pity they don’t amend the guidelines then ! Sorry I’m whistling in the wind again 😳

[PMRpro Ambassador in reply to DorsetLady]

Hope springs eternal!

Trouble is, the guidelines are a consensus product and there are too many of the other sort around. What we need is a sort of discussion network of the Good Guys as opinion leaders who publish articles about the large numbers of patients who need long term low dose pred (for example) or their set of patients under 50 who do have PMR in the absence of anything else.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well you know a few…..but probably not enough!

[PMRpro Ambassador in reply to DorsetLady]

We're working on it!

[Hidden]

Hi Mack100My bloods results on the 6th of May2022 , inflammation markers (ESR and CRP were excellent) at that stage i had slowly tapered to 3mg of prednisolone. Now I am on a journey of 2.5mg of prednisolone and so far so good. I saw the consultant rheumatologist’s as a private patient in October 2021 in a 15 minute session He gave me the information that I had already knew as I had done my research on the topic of PMR. I don’t see the point of seeing him again. So I monitor and liase with my GP. My plan, hopefully is to get to 0mg by end of July 2022. Time will tell if I will be successful.

[PMRpro Ambassador in reply to Hidden]

Don't make the mistake of setting fixed goals - in the great scheme of things 2.5mg pred is a fair bit! Even 1mg is the difference between being OK and not - at any level.

[Hidden in reply to PMRpro]

I will definitely taper according to the clinical guide lines. My experience through this journey of PMR would indicate that with blood results (ESR n CRP) and how I feel would also determine my progress in coming off the steroids.I am in no hurry coz the painful experience from last July/August 2021 onwards is still is very fresh in my mind.I don’t wish to have any flares. So slow and steady does it.I will get my bloods done again sometime in July2022 and see how I am progressing.

[Sofarbrnun]

Sorry, this was meant for PMR Pro. I've been on 1mg Rayos (Lodotra) for at least 2 or 3 years. My inflammation levels are down, but when I try every other day, I get neck pain and headaches. So, I tried 1/2 a pred with Rayos every other day. Went on for a month or so ( during 1 mo hurricane evac) but the neck pain got so bad, I had to wear a neck brace. Now my insurance is pulling the Rayos, and my head is killing me. I have a script for 1mg prednisone and also the 4mg methylpred.I can only do half of the regular in order to taper. Any suggestions? I guess I'll take one or the other. Wish I could get the 2 mg methylphenidate, but not available.

[PMRpro Ambassador in reply to Sofarbrnun]

Do you really mean 1mg (one mg)?

If you do, I'd just accept the 1mg ongoing to be honest - though the price of Rayos/Lodotra here is about 1 euro a day so I could afford it even paying for it.

OTOH, if you mean you are at more (or even just 1mg) have you tried using the DSNS taper (details in the FAQs) starting with 1 day new, 6 (or more) days of the old dose before trying the new dose again. That makes it a much gentler reduction and was partly designed to deeal with tablets you couldn't cut to get smaller dose changes.