PMR FLARE? ADVICE PLEASE!

[Songbird69]

Hello my friends,

I believe my PMR came on originally after seeing an osteopath back in 2017.

I have been on 2mg Pred seemingly forever and started a reduction to 1.5mg 6 weeks ago. All was going well. This week was supposed to be 1.5mg every day.

Last Saturday in desperation to solve abdominal issues I had some acupuncture, and after the treatment had finished, the practitioner looked at my neck as I’ve had a sore spot which catches from time to time following a car accident. He prodded my top back, neck and into my head which caused excruciating pain. The next few days I felt worse than I was before I saw him and my arms and legs ached like mad. This seemed to feel better after a while but I have noticed that my leg muscles are hurting going up and downstairs in the mornings.

Over the weekend, I have been ill with cramps and vomiting due to an ongoing health issue, so yesterday I upped the Pred to 5mg, on the basis of sick day rules.

Worried the PMR might be returning after my acupuncturist experience so not quite sure what to do next. Do I continue on 5mg for a couple of days with a quick reduction to 1.5mg or go back to 2mg - or start a different regime to quash any PMR inflammation?

Hope enough info here for advice.

Thank you.

[DorsetLady PMRGCAuk volunteer]

I would give the 5mg a bit longer 5-7 days then down to 2mg.

Hopefully that should be okay. ..and don’t let anyone prod you again!😳

[Songbird69 in reply to DorsetLady]

I’m all prodded out! Never again!

[piglette in reply to Songbird69]

Never again for me too!

[Songbird69 in reply to piglette]

Is that how yours started? 😩

[piglette in reply to Songbird69]

There was a new group of acupuncturists in my area so I thought I would give them a go. I had a Russian lady, acupuncture definitely did not help my PMR! I think some people find it helps though.

[Songbird69 in reply to piglette]

We live and learn!! 😩

[PMRpro Ambassador]

I'd see what happens over the next few days.

[Songbird69 in reply to PMRpro]

Now have pretty bad neck and shoulder pain and lower legs painful to touch like they were in my early PMR days.

Wondering whether to hit this a bit harder? Say 10mg for 5 days, then taper somehow back to 2mg. Or 7.5mg and taper down reasonably quickly if improvement?

What do you think? I can’t bear the thought of starting all over again after six years!

OMG!

[PMRpro Ambassador in reply to Songbird69]

You should really have gone to 7mg straight off for a flare - and honestly, even 1mg can make a big difference. You could do 10mg for 5 days and drop straight to 5mg maybe. But you do really need to tell your doctor.

[Songbird69 in reply to PMRpro]

Thanks Pro. OK. Is it worth trying 7mg first or just go for the 10mg and drop to 5mg - and then down to 4mg, 3mg, 2mg?

I didn’t really twig it was becoming a flare until I first posted.

Honestly, I AM seeing my GP on Thursday but I trust your judgement better than hers. She is a bit of a chocolate teapot.

I have also emailed the rheumatologist but they take 5-7 days to reply.

Such is life.

I do appreciate your input.

😍

[PMRpro Ambassador in reply to Songbird69]

Don't get ahead of yourself!! If it were me, I think I'd take 10mg for at least a couple of days and see how that goes. If it has a good effect, then go back to 7.5mg

It is always difficult to tell if it is just a slow build up because the 2mg was minimally too low - how long had you been on 2mg?

[Songbird69]

Been on 2mg for at least 18 months. Too coincidental that it all happened straight after the Chinese man’s antics.

I can’t help getting ahead of myself! Been so ill with other things, that this is just another blooming thing.

OK. Will try 10mg for a couple of days.

So, if I can get it under control, just keep dropping every few days, on a watch and wait basis? I can’t remember the window of time where you can then drop back to where you were without having to taper dead slowly.

Sorry to be a pain and probably a moron too!

[PMRpro Ambassador in reply to Songbird69]

Then it wasn't that - the coincidence has to be is this a flare that is just so (which happens, it happened to me) or due to the Asian gentleman's activities (which is why I avoid them).

The trouble with that is that IF 10mg gets it sorted, then dropping every few days doesn't allow long enough to know if the new dose is enough. You can take the higher dose for up to 2 weeks and then drop back to the old dose, or just above, It IS a conundrum as there is no way to know WHY when a flare happens that isn't connected with a reduction, and this doesn't appear to be.

[Songbird69 in reply to PMRpro]

Thank you. I think I was temporarily, in my panic, forgetting everything I ever knew about PMR. So thank you for being so patient with me.

Out of interest, I was reading about a study, where people had flared following a fall, and they were all at 5mg or below. I can’t remember the exact figures but a high percentage were able to get back to baseline after a week on 10mg.

Taken 10 mg this morning for starters!

Snowing here! One of my three year old twin grandsons is having a whale of a time with his first taste of the white stuff!

Fun in the snow!

[PMRpro Ambassador in reply to Songbird69]

Yes - I've referred to a couple of studies over time, I think people tend to forget that when you fall it is a shock and that shock affects your whole body which would normally secrete a burst of cortisol to get you through it but at those low doses it isn't enough to replace that and your adrenals are suppressed. After a week or so things have calmed down.

If you don't learn anything else with PMR - you do learn patience!