Advice needed

[jaycee444]

Have been reducing slowly (half a mg per month) and have been on 7.5 mg for past 3 weeks. Woke this morning with all familiar PMR signs - pain around lower back and thighs and around shoulders and upper arms . Can you give me some advice on how to deal with this. How much should I increase to try and knock it on the head and how long for? I want to get this under control and dont want to bother my GP as our surgery is dealing with the Covid Vaccine administration so it all hands on deck there.

[PMRpro Ambassador]

If it were me I'd take 5mg extra now, then 10mg for 2 or 3 days and go straight back to 8mg once the symptoms have faded and hope that is enough. Many good doctors suggest adding 5mg to the dose where the flare happened for up to 7-10 days before going back to the dose above where it happened. My suggestion is what I would do, if you catch it quickly it should be enough - if it isn't you can be more extreme.

[jaycee444 in reply to PMRpro]

Thank you (and DL) for advice . Will follow it and hope it does the trick.

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro’s comments.

[Harrywogan]

Hi Jaycee I was reducing 1/2 mg every 8 weeks and I thought that was very slow managed to get to 4mg and then had a flare and went back to 10 for 4days then just went back to 7 and staying there for a month then will try again my daughter keeps telling me to slow down I was so bad had to roll out of bed but always went swimming because I was good in pool no pain fantastic.

[jaycee444 in reply to Harrywogan]

Thanks for your reply. Did manage to speak to GP today who says add 5mg for a week (making 12.5mg) then drop to 10 mg for 1 month and reduce slowly again from there. Hope it works. This is the first major flare up I’ve had and it’s been so painful and depressing that I just need to knock it on the head ASAP.

[Harrywogan in reply to jaycee444]

Hi again Jaycee I've had 3flares but iam now into my 4th year and it does get me down but when I read other peoples journey I know we are not alone.Good Luck

[PMRpro Ambassador in reply to Harrywogan]

If you flared at 4mg - this time try stopping at 5mg for a few months before heading onwards. A top PMR/GCA rheumy likes to keep patients at 5mg for up to 9 months and finds it makes a big difference.