Tapering after a flare. It wasn't just Carpal Tunnel syndrome!

[HelenDaisy]

Please can you give me some advice?

I was diagnosed with PMR in April 2019, and have been tapering slowly (with 2 flares) with the help of Leflonamide. All seemed to go well and I was on 2.5mg and feeling good.

A month ago I posted about Carpal Tunnel syndrome. I saw a hand specialist and had nerve conduction tests. Yes, I do have mild CTS, but he recognised a PMR flare. My hands were very swollen, and I was losing strength and the ability to do many things. Frightening, but I had no leg/hip/shoulder symptoms like before. He suggested 9.5mg prednisone (5mg above where I was last comfortable) and my GP agreed.

A month later I'm now tapering slowly from 9.5mg. My rheumatologist and GP are happy for me to taper any way I like, but my rhuemy suggested alternating days of 9.5 and 9mg for a fortnight, and then reducing 0.5mg that way every 2 weeks. That went well last time until I hit the 5mg level. So my question is: should I taper that way until I hit perhaps 7mg, then do the Dead Slow taper after that? Or do the DS taper from now?

Thanks in advance

[DorsetLady PMRGCAuk volunteer]

Not a fan of alternating days, think it confuses body - but some Rheumies seem to like it.

Normal treatment for a flare is a quicker step down to just above where issue’s started, but as you’ve been at higher dose for 4weeks then you probably are better suited to a slower taper……

Maybe try 0.5mg every 2 weeks until you get to 7 or 7.5mg, and then try one of the slower tapers.

[HelenDaisy in reply to DorsetLady]

Thanks that’s what I thought. I wasn’t keen on staying at 9.5 that long but my orthopaedic hand doctor recommended it until I had the test results. He also said that I might be one of those who would have to stay on a low dose forever and it wouldn’t be the end of the world. My GP said that too which surprised me. Of course the ideal is to come off, as I’m a steroid induced diabetic with osteopaenia.

[DorsetLady PMRGCAuk volunteer in reply to HelenDaisy]

You may or may not need a small dose forever , but at 3years in, I would say that’s a premature comment from doctors.

Your diabetes may get better as you get lower, and your osteopenia doesn’t necessarily become osteoporosis -many older people have osteopenia without being on steroids….don’t despair. Think your are getting doom & gloom from medics unnecessarily.

[HelenDaisy in reply to DorsetLady]

you’re right. I have osteopenia for another reason: I had undiagnosed hyperparathyroid disease for years. Surgery for that in 2018, then PMR in 2019. And years of orthopaedic surgery before that. And you’re right, my diabetes was improving as I tapered. I’m just so grateful that I have a good team of doctors and that I can use my hands again.

[pammy_hyland]

I've never been able to reduce below 4mg I've been on a maintenance dose of 4mg for 10 years now and staying on it as life is good on that xx

[pammy_hyland]

CTS is often a part of PMR I've had the op on both my hands about 10 -12 years ago and never had a problem since ..its well worth having it ..its not a big op and over in a few mins ..the worse part is not being able to have both hands done at the same time but still worth it xx

[HelenDaisy in reply to pammy_hyland]

my husband had his done in 2020

It’s not the op that bothers me but the 2 weeks off work for each hand!

[pammy_hyland in reply to HelenDaisy]

I was a childminder at the time I worked when I had both hands done I was just careful x

[HelenDaisy in reply to pammy_hyland]

That's great to hear. Sadly I teach exercise classes, so I would have to have time off for recovery.

[pammy_hyland]

Oh I see.. but well worth the time off... as it ony gets worse with time xx