How to deal with flare up: I have been down to 9mg... - PMRGCAuk

PMRGCAuk

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How to deal with flare up

Theziggy
Theziggy

I have been down to 9mg for the past 2 weeks. then on Friday woke with sharp pain in right kneecap, couldn't bend the knee. I put it down to using weights at the gym on Thursday. It eased off on Monday, then on Monday evening my left shoulder started aching and grew increasingly more painful overnight (I am having to type this with one hand). So I knew it was my PMR (or maybe steroid withdrawal symptoms???)

So, 2 flare ups in quick succession. Any advice will be most welcome

12 Replies

No doubt a PMR person will comment. However, I’ve noticed that with Pred, any damage from over doing it physically in some way shows itself two days or more later. It then can take me a week or more to get better. Was the weights session unusual in any way?

Theziggy
Theziggy in reply to SnazzyD

No, it was a very short session after doing a run walk session on the treadmill (week 4 of Couch25K), and was mainly upper body exercise.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

PMR doesnt like repetitive exercises, so maybe that has contributed to “flare” - you need to allow your muscle time to recover, they are not as resilient as pre illness.

I notice you are back in training, and that’s your choice, but I think you may be pushing yourself too quickly and too much. All things in moderation, even if you were very athletic pre PMR.

2 flares in quick succession should tell you, you are doing something wrong!

Theziggy
Theziggy in reply to DorsetLady

Thanks DorsetLady

My Rheumy suggested it, both the jogging (I am only doing very light slow walking/jogging) and light weights were suggested for keeping bone strength. I have been back training for 6 weeks and only trained once last week before the flare ups. Should I up the prednisolone?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Theziggy

Hi, in a previous post you wrote this -

My tapering plan given to me is

15mg for 2 weeks

12.5 for one month

10mg for one month

and then reduce by 1mg per month

That maybe where your problem lies (although it is a recognised taper sometimes it’s too fast).

I would have stayed at 15mg for 4 weeks, the 2 weeks may not have been long enough to get the accumulated inflammation under control properly, so it wasn’t 100% controlled before you dropped to 12.5mg.

The 4 weeks at 12.5mg was okay, but maybe only just enough to control things, so when you dropped to 10mg you had gone below your required level.

I would try 12 for a few days, maybe a week, and see if things improve- you could then come back down to 10mg in two steps of 1mg each (1or2 weeks on each) - then revert to monthly reductions of 1mg as per plan.

You may need to run this past your Rheumy or has he given you permission to adjust doses.

Theziggy
Theziggy in reply to DorsetLady

That was the plan the Rheumy gave me, and I have only seen him twice and didn't have any clue about PMR when he gave me the plan.

He said he would see me once more and if things were OK he would discharge me back to my GP. I have no way of getting in contact with him.

DorsetLady

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Theziggy

Okay, well in that case, unless you want to speak to GP and can’t contact Rheumy - do you have a number for local Rheumatology department at hospital - I guess you’re on your own.

As I said it is a recognised plan, but what looks good on paper doesn’t necessarily work in real life.

I’ve said what I would do, but that’s only my opinion.

PMRpro
PMRproAmbassador

Try adding 5mg for a few days and then drop back to 10mg - because I'll bet the 9mg isn't quite enough and the left over inflammation has built up over the 2 weeks. Then don't be in too much of a hurry tp ditch 10mg.

The treadmill isn't always a good idea - you don't have the variation in pressure on the knees and in speed in the same way you do walking on the ground. In PMR weights are also not always a good idea. Been there, done that!

The Quick and Kirwan reduction starts at 15mg - but for 6 weeks. Then 12.5mg for 6 weeks and then 10mg for a year. They fnd that reduces the flare rate to 1 in 5 instead of 3 in 5 - and as I have already said somewhere to day I think it is because they stick at a sensible dose for the first 16 or so months which is when the underlying cause of PMR is most active.

rcpe.ac.uk/sites/default/fi...

I'm sure your doctor thinks keeping up the exercise is a good idea - unfortunately PMR ravaged muscles don't always agree. Go back a bit to lower intensity - it has been found walking is just as good as jogging with less potential for injury.

Hi PMR pro, thanks for your input, from having had diabetes type 2 (skinny person) for 12+ years I know that everybody's miles will vary with a disease/condition.

I think your advice of going back to 12.5 mg etc. is a good plan. I looked at the tapering plans online at Ms Isetts site and the 25 day DSNS Version 3 looks promising.

I think that when I phone in my monthly scripts that I can ask for what I need especially after the flare ups.

Do people have trigger points in their joints? My left groin has a constant tiny niggling point and F it moves I get a focussed point in another joint that then flares up to be full blown.

"Mama always told me there'd be days like these." V. M.

😎

PMRpro
PMRproAmbassador in reply to Theziggy

No. trigger points tend to be in muscle. If your groin is painful it is most likely bursitis, iliopsoas bursitis hurts into the groin and I had that with PMR pre-pred. I started at 15mg and it took about 6 months for the hip pain to fade - I was beginning to think it was OA but then suddenly realised one day - it didn't hurt any more! I do get trochanteric bursitis too but at the time the iliopsoas was more painful, sharp stabbig pain while the trochanteric was an ache, especially when I lay on my side. Rather messed up Pilates!

Theziggy
Theziggy in reply to PMRpro

Hmmm the iliopsoas bursitis does seem to be a possibility, I recall that when the GP(s) were trying to work out what was wrong with me that I had quite an extensive and painful ultrasound on my groin. Worth asking my rheummy when I see him again.

Thanks PMRpro

BTW you guys, thanks for your input, knowledge and support.

PMR would be a lonely place on my own, +1 for the Internet. (I had a bit of Forum knowledge from my diabetes which taught me about low carbs etc)

Thank you all. Get weller.

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