6 month hold at 5 mg

[ashlandbird]

I faithfully read this forum daily ever since my PMR journey began 1 year ago. I live in the US where there are no support groups that I can find. I seem to be lucky so far. No flares or pain! I have a great rheumatologist who has treated me since Aug. 2023. With his approval, I been using Dorsett Lady's slow 5-week taper down to 5 mg. I should get there in about 7 weeks. At my 6 month checkup this week, my doctor told me that once I get to 5 mg, I should stay there for 6 months. (which I'm glad to do). I think he is waiting to see if any RA symptoms emerge. Has anyone else heard of this protocol? Thanks for all the great information. It's made me feel less alone.

[DorsetLady PMRGCAuk volunteer]

Not sure why he thinks RA symptoms should emerge at 5mg. But staying at that dose for 6 months may well be beneficial for your adrenals, and give them the chance to seriously think about getting back to working again.

[ashlandbird in reply to DorsetLady]

Thanks. I sing to my adrenals everyday as a walk to the tune of "Wake Up Little Susie" by the Everly Brothers. "Wake up little adrenals, wake up. Wake up little adrenals, wake. Last summer was not so hot. PMR kicked my butt. Eleven months later I'm down to 6 and I need your cortisol now, wake up little adrenals, wake up little adrenals, pump it out now. What ya gonna tell your bursa, what ya gonna tell your hips. What ya gonna tell your arms when they say Oh La La? Wake up little adrenals, wake up little adrenal. Pump it out now!

[DorsetLady PMRGCAuk volunteer in reply to ashlandbird]

Love it😊.. hope they are listening.

Fan of the original (song and singers) 🎼💃…

[Sophiestree]

sounds like you have a sensible rheumy... did you mean any pmr symptoms emerge?

[ashlandbird in reply to Sophiestree]

No, he said rheumatoid arthritis.

[Rugger]

Five months ago my Rheumatologist told me to go back to 5mg and stay there as long as I needed to. I'm testing if I can reduce again, but she won't mind if I can't, when I see her next month.

I have had a longer journey than you, with relapses along the way, but I am in the care of a world expert in PMR & GCA, so I feel blessed.

Best wishes.

PMR : 2016

GCA-LVV : 2019

[PaaDal91 in reply to Rugger]

care to share? in uk or us or?

[Rugger in reply to PaaDal91]

In the UK. She does no private work and works only part-time in the NHS, as she does research for the rest of her time. I don't know how long people are waiting to get on her list - if she even has one! I waited 6 months, 7 years ago!

I see you are in the US, so out of reach.

Very best wishes.

[PMRpro Ambassador]

We talk about Prof Rod Hughes on here a lot as a good PMR specialist - and one of his favoured techniques is to keep patients at 5mg for up to 9 months before continuing the taper. He finds it allows the body to catch up and reduces the rate of flares at lower doses.

[ashlandbird in reply to PMRpro]

Thanks PMRpro. I'll look him up.

[Badmoon1]

connect.mayoclinic.org Polymyalgia Rheumatica (PMR) Support Group. USA

[PaaDal91 in reply to Badmoon1]

yes, i use that one too. this one i find better