how does overactivity impact on PMR & GCA? - PMRGCAuk

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how does overactivity impact on PMR & GCA?

Albyn32 profile image
9 Replies

I was steady on 5 mg for 6-8 weeks and on 3 different occasions tried to drop to 4 and a half mg.

Unsuccessful on all attempts and as I felt stiffness coming on after 3-4 weeks had to follow the flare protocol and return to 10mg for a short period and then reduce again later. Assumed that I was not ready to drop below 5mg for a little while

Steady on 5mg for about 2 months and then had 2 hectic weeks of over activity which resulted in all the symptoms of adrenal activity lasting for 2 weeks followed by stiffness and pain in the third week. Now following the flare protocol once again (10mg for 10 days) . I intend to drop to 6mg in 2 stages.

How long do I stay on 8mg before reducing to 6mg?

Am I correct in assuming that the overexertion brought on symptoms of A.I. or was the whole experience just the prelude to a potential flare?

I would really like to understand how overexertion reacts with the steroids. Does it use up too much of the steroid and so let more inflammation take over - or is that an oversimplification?

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Albyn32 profile image
Albyn32
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9 Replies
piglette profile image
piglette

The mantra with PMR is rest rest rest. PMR is in control and you have to ensure you keep your foot well and truly on its head to stop it leaping up and biting you. Whatever your dose of steroids, don’t reduce unless you feel OK to do so, as the PMR is lurking.

LittleJane profile image
LittleJane

I would also like to understand better. If I have a restful day, light housework or baking, which is my go to stress reliever, followed by a rest and hubby cooks, I will have energy reserves the following day. If I push energy reserves into deficit I will have an awful following day. I've been wondering whether it is to do with Prednisolone deficit or increase in PMR inflammation, maybe a bit of both 🤔

PMRpro profile image
PMRproAmbassador in reply to LittleJane

Both probably. In DL's intro post there are links to some other posts. One has a few allegories for chronic illness, Christine Miseriando's Spoons theory and Living with a Gorilla. And some less fun versions for dealing with the different sorts of fatigue we experience.

PMRpro profile image
PMRproAmbassador

I think it is more likely that the 2 hectic weeks of overactivity may well have caused quite severe DOMS, Delayed Onset Muscle Soreness, which with a combination of PMR and possibly pred, can take quite a time to resolve. It is why we advise really cutting back on exercise until you are sure you are ready by building up duration and intensity slowly - which of course you hadn't, had you?

DOMS is caused by doing more than the training effect can deal with. Training happens by a series of events in the muscles: the tiny spindles in the muscle fibres are torn apart by the movement of the muscle, then they heal and are stronger. You could envisage it as being a bit like a bottle brush inside a bottle - if you don't pull it all the way out, it will go back to the bottom easily but if you pull it right out, the brush bit takes more of a beating, In slowly built up training units, there are small breaks that then heal within a couple of days but if you go at it hell for leather they rip right out and take a lot longer to heal and provide the stronger trained muscle. Both the PMR attacking the muscles and the pred mean it takes much longer for the muscle to heal, depending too on how much damage was done. Sometimes severe DOMS can take weeks, even months to heal fully. And it is compounded if you decide to push through the pain and continue activity despite aching muscles. Sometimes it never heals fully - you remain with pain longterm. Anyone, not just PMR patients, doing exercise should alternate exercise and rest days - the rest days are equally important. Especially when the muscles are compromised by illness, even a cold.

Albyn32 profile image
Albyn32 in reply to PMRpro

Thank you for explaining the doms and thank you for your advice.

I did have rest days in between but was still much too cavalier and did much too much on the exercise days. No fool like an old fool.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Others have responded on the fatigue, but as PMRpro has advised that my intro post contains links on similar.

As for this current flare and returning to previous dose, the usual advice for the time on an interim period is 5-7 days.

However would say that if you keep flaring at 5mg, then perhaps you should consider staying on that dose for a few more months. Do you use a slow or a [very slow] tapering plan when trying to reduce?

Albyn32 profile image
Albyn32 in reply to DorsetLady

Thankyou for your response. I only taper half mg at a time and have tried your 5 week taper and a straight taper. same result

PMRpro profile image
PMRproAmbassador in reply to Albyn32

Then that suggests you have reached your interim goal: the lowest effective dose. You aren't heading relentlessly for zero pred - and when your body rebels repeatedly at the same sort of dose, it is telling you something. If you go below that dose - you will flare as unmanaged inflammation builds up again. Leave it long enough and you will end up back at the start again!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Albyn32

Just for the record, agree with PMRpro.so maybe stick at 5mg for a few months - give yourself a break from tapering - will help adrenals as well if they need it.

When juju feel able to try again, you can easily make the taper longer- I have a 7 week and a 14 week one -should you need either of them.

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