I have had PMR for 3 years I have manage to reduce to 2 mg a day . Went back to 5 for a week due to flare, what is the best way to reduce .

[Rubybaby1]

PMR flare

[Hidden]

Hi, if it's just a week you can go down straightaway. But I always find I go back to 0.5mg or 1mg above the flare dose for 2 to 4 weeks before even considering tapering. And then only if I have no symptoms. I am doing it myself at the moment. 10mg for a week then try 7.5mg, rather than 7mg. 🌻

[Rubybaby1 in reply to Hidden]

Thank you so much , I will try that . Fingers crossed

[SheffieldJane]

I have returned to my previous dose with success after a week. Good luck!

[SusyTe in reply to SheffieldJane]

Do you think that still applies when dropping back from 10 mg to 5 mg - that it is ok to drop straight back? I was on 4.5 mg and thought I was doing ok for a month but then had an awful flare so went to 10 mg for a 3 day “Pred burst” then dropped to 5 mg - I think 4.5 mg was just too low for my stage. I am hoping to stay on 5 mg for at least a month but am struggling. Maybe I should have stayed on 10 mg for a week but I was worried about the big drop back down to 5 mg. So frustrating - it has taken me 4 years to get to this point. Any advice would be really welcome.

[DorsetLady PMRGCAuk volunteer in reply to SusyTe]

Personally I would have done either a bit longer on the 10mg say 5-7 days and/or come down in two steps 10-7.5 mg for a week then down to 5mg.

You could try that now. It’s only another 2 weeks.

Four years - still about par for the course- 5.9yrs is average - so don’t look at the calendar (especially in these times) - listen to body.

[SusyTe in reply to DorsetLady]

Thank you, DorsetLady - your sage advice is much appreciated. ❤️

[PMRpro Ambassador]

When you have a flare it probably isn't a good idea to drop back too close to the dose you were on when it happened - especially if it appeared quickly at a given dose. At low levels it is a good idea to not only drop in small steps but also to stay at each new dose for a couple of months to be sure it is still enough.

If you have been at a dose for a while you have to also consider whether this flare is due to the disease activity increasing, meaning you need more pred to manage the inflammation.

[SusyTe in reply to PMRpro]

Thank you, PMRpro. I was so thrilled to get to 4.5 mg - silly, I know - but I think it was too low so the inflammation crept back up and then bam - a horrible flare. With your and DL’s wise advice I shall go back up to 10 mg until next week and then drop to 7.5 mg for a week then to 5 mg and stay there for a couple of months. I really appreciate your replies. Thank you both so much. ❤️❤️

[PMRpro Ambassador in reply to SusyTe]

Sounds better - but are you sure that the 5mg is still enough? One thing you could try in case it isn't is to take a bit more once a week or so?

[SusyTe in reply to PMRpro]

Thank you - I did feel ok on 5 mg. I dropped to 4.5 doing one of the very slow methods but I think I was being too optimistic. Thank you for the tip re the once a week higher dose - much appreciated. ❤️

[moorfield in reply to SusyTe]

I am also in your age range and have struggled between 8mg and 5mgs.At 5mg I had a horrible flare up so went back to 7.5mg and will stay there for 1 month then slowly reduce by 0.5mg every 2 weeks.

Just out of interest has your pulsatile tinnitus settled? ?...

Cam I ask how old were you when you were diagnosed with PMR ?

[SusyTe in reply to moorfield]

Hi. I was 53 when I was diagnosed in 2016. I do still occasionally get a whooshing in my ears but not very often. I am sorry to hear about your flare - I think 5 mg is a difficult dose. I reduced to it on the advice of my rheumy, Dr Hughes - he was very keen for me to get there. Once I get there again I will stay on it for a lot longer this time rather than trying to get to 4.5 mg. certainly I found the reductions far more difficult once under 10 mg. Hang in there - we will get to remission one day! ❤️ X

[bakingD in reply to SusyTe]

Hi Susy

I was interested to see your post -I live in Petersfield and saw Dr H last year -as my regular rheumatologist wanted me on MTX-I decided to stay with Pred and am on 5 mg now but no hope of gettting any further as still have pain!how are you getting on?b.w Diana

[SusyTe in reply to bakingD]

Hi Diana. Glad to hear you saw Dr H. I did try MTX for a few months but it didn’t help me reduce my Pred and made my hair fall out so he told me to stop and stick with just the Pred. He seems to feel that 5 mg is a good dose for us to get to and he told me I could then stay on it with few side effects. I got over-confident after a month on it and decided to reduce to 4.5 mg 🙄 - lesson learned! How long have you been on 5 mg for now and how much pain are you having? It might be a good idea to go up a little and try again in a month or two? On the advice of DorsetLady and PMRpro I have gone to 10 mg until next week then will drop to 7.5 mg for at least a week and then try 5 mg again. But I have had PMR since 2016 so may be further down the road than you.

[bakingD in reply to SusyTe]

I was diagnosed may 2018-I got to 5 mg last Nov but have never been pain free since the first few weeks when all pain went away!!I find Paracetamol helps-I tried to go to 4.5 last Nov and then bang-big flare!!!

Guess you’re right that I need to go back up-do you get frustrated what are you on now?I’m 56 yrs old !you’re luck to be under care of Dr H I liked him!!!

[SusyTe in reply to bakingD]

I get frustrated too, Diana - but I think we just have to be patient. There is no rushing our bodies or this illness. I was on 5 mg for a month or two then tried to reduce to 4.5 mg and bang - big flare. So have gone to 10 mg until next week and then will go to 7.5 and then to 5 mg again - and stay there. I think all the worry about Covid19 is making things worse so am going to find my pain free dose and forget about reducing for a while. If 5 mg isn’t doing it for you then I would go up a bit.

Yes - very lucky to be under the care of Dr Hughes - he is super.

I am 57 but feel a lot older!!

[bakingD in reply to SusyTe]

Thanks for the advice !!Good luck with your plan

I will go up again thanks

[SusyTe in reply to bakingD]

Good luck with yours, Diana! Stay safe. ❤️

[Hirwaen]

I'm struggling a bit, 3years in, managed to get to 6mgs, GCA a year age, and I have to admit I don't really feel 'normal' at this dose and have decided to go back to 7mgs and see if things improve. I certainly would not want to do strumming without expecting consequences.

Hope everyone is coping and a big thankyou to the moderators for continuing to advise us all🐦🌞🐸💖🌷