Up or down?

[Chrissiedon]

I am in a full blown flare after a couple of stressful weeks and think I should go up from my 15mgs to 20mgs. How long can I stay on 20mgs before dropping back to 15mgs without having to taper again. Then how long should I stay on 15mgs before attempting tapering again?

[DorsetLady PMRGCAuk volunteer]

If you stay at 20mg for about a week, and that solves the problem, then you should be able to drop back down to 15mg without too much of a problem.

Looking at your previous posts you seem to have had PMR a long time, and still be on a high dose - are you sure there isn’t anything going on which is hampering your reduction?

A bit more information on your profile might give us a better steer to answer queries.

[Chrissiedon in reply to DorsetLady]

I do have severe arthritis in hips and knees but my problem is extreme stiffness and aching in my legs...

[DorsetLady PMRGCAuk volunteer in reply to Chrissiedon]

I also have arthritis and have had one hip, one knee replaced, and certainly found that pre operation my right upper leg was affected from the hip, but I think you can usually tell the difference between arthritis and PMR.

Think a bit more investigation needs to be done.

[PMRpro Ambassador]

If you are struggling at 15mg after a long time, maybe some thought on the part of your doctor is called for?

Are you under a rheumatologist?

On reflection having looked at your last post - you need to find a better rheumatologist and get some advice as to whether this really is PMR. It may be, I have struggled to reduce for over 10 years but I am able to function well on 10mg and have been down to 5mg.

Where are you?

[Chrissiedon in reply to PMRpro]

Yes I see him twice a year and he wants me to taper quicker than I can manage....

[PMRpro Ambassador in reply to Chrissiedon]

Which is pointless - there is a definition of madness: repeating the same action and expecting a different result...

Where are you?

[Chrissiedon in reply to PMRpro]

I am in Essex....

[PMRpro Ambassador in reply to Chrissiedon]

Which hospital?

[Chrissiedon in reply to PMRpro]

I see him at whips cross. I do like him and he is very patient with me. He wants me to take methotrexate but I’m not comfortable with that. He does tell me to taper but does not get too uptight with me when I can’t get down to his recommended dose.....

[Blearyeyed]

Like DL says , a week , at least , but if you feel that you are in a full blown Flare and you are not confident that it's totally under control in 7 days , you can take it up to two weeks , or 10 days and then possibly reduce to 17.5mg for four days before going straight back on 15 mg , and hopefully prevent the need for the Full Taper.

When back at 15 mg , don't think about starting a new taper again for a month if you have been having the ongoing issues that DL and PMRPro have mentioned.

It may actually be a good idea to go and see your GP today or tomorrow and have some blood tests done while your in a Flare , so that you have something on your medical records to show to them that this is still happening.

And , as DL and Pro have said , if you have been having continued symptoms , Flares and have trouble tapering after some time , you do need to have further investigations done by the GP to check that some other health issue isn't also affecting your recovery.

Or , if you know you also have other medical issues , let us know , and someone could help with more advice , and , speak to you GP about the possibility that those issues may need more treatment or monitoring so that your PMR can also improve.

Take care , and give us an update when you know what's going on.

[Chrissiedon]

Thank you.... I will up my dose to 20 tomorrow and make an app with my doctor. I will keep you posted.....

[Oxford8]

In July I had a full blown flare, having tapered down too quickly. I had also burnt my foot and ruptured my achilles tendon, which contributed to the flare.

My Rheumatologist said I should:

Go up to 20mg for two weeks.

Then 17.5 for four weeks.

Then 15mg for 4 weeks.

Then reduce by 1mg per month...

That plan has worked for me. I'm down to 15mg, 14mg next week. My only real pain now is from my achilles tendon rupture which went undiagnosed for 8 werks.

Hope this helps.

Christine 🌷

My Rheumy has acknowledged that previously insisting on a swift taper from 20 to 8 mg in a matter of a few months was a mistske.

[Chrissiedon in reply to Oxford8]

I will try this, so much more help,on this forum than from any doctors......

[PMRpro Ambassador in reply to Oxford8]

And THAT is a sensible taper to go for right from the start