how does overactivity impact on PMR & GCA?

[Albyn32]

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?

[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.

[Hidden]

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 Ambassador in reply to Hidden]

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 Ambassador]

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 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.

[Sophiestree in reply to PMRpro]

brilliant explanation

[DorsetLady PMRGCAuk 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 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 Ambassador 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 PMRGCAuk 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.

[tangocharlie]

I agree with what the experts have said. IMHO 5mg is such a low dose, if I ever get back there I will stick at it for ever. Push below that and you risk everything flaring up, the scorpion's tail of PMR coming back to bite you. And on top of that possibly adrenal problems or certainly feeling sluggish while the adrenal glands come back to life having been suppressed while on Pred. Interesting that some medics even see 10mg of Pred as a low dose. These are only my own personal observations based on my experience and having read hundreds of similar experiences on here. I've come across so many cases of people who had got off pred and supposedly over PMR but then it came back again or worse morphed into GCA . Not everyone, I'm sure there are plenty of successes too, but enough to make me think. There must be some research on this because Prof Dasgupta has several times said he recommends patients stay on a low does eg 2mg rather than coming off entirely. One thing I have also learned over he years is that winter is hard on our bodies and drives inflammation so not to try and push things then, wait til spring! I often flare in Jan or Feb. Enjoy winter and do all those hygge things like curl up with a good book and a nice thick wooly jumper 😀

[PMRpro Ambassador in reply to tangocharlie]

There are some rheumies who tell patients not to try to taper in winter.

[sidra1968 in reply to tangocharlie]

Yep, my pain management doc (former anesthesiologist) referred to 20 mg as a "oh, so not that high of a dose" when I got my steroid epidural injection (last year when I was on 20 mg) It surprised me, but was nice to hear lol, So they all do have different views.

[AtopicGuy]

The immune system doesn't just fight off bacteria, viruses, fungi and parasites. It also clears away our broken and worn-out cells so that new ones can grow back. Exercise increases the need for such 'spring-cleaning' and so boosts the immune system. Unfortunately, those with autoimmune diseases do not want their immune systems boosted; we take steroids to calm it down. Gentle activity is best.

[PMRpro Ambassador in reply to AtopicGuy]

"Unfortunately, those with autoimmune diseases do not want their immune systems boosted;"

I never feel the word boosted is the correct choice. It isn't entirely that the immune system is TOO active - it is active in a deranged manner. That is a different thing.

[AtopicGuy in reply to PMRpro]

Just avoiding jargon.

[tangocharlie in reply to PMRpro]

I'm a bit confused by articles about superfoods, pills etc that claim to boost your immune system. Do I want to boost mine or not? I've always thought it odd that I don't usally get colds etc and wonder if it's because my body is on high alert so fends off attackers? Or maybe its just because I don't come into much contact with children who are the germ spreaders.

[PMRpro Ambassador in reply to tangocharlie]

Avoiding kids will do it!!!! I don't believe any of the claims - vit C shortens a cold in highly trained professional level athletes. No-one else. Zinc might help. But not enough to make it worth it ...

[tangocharlie in reply to PMRpro]

I'm trying to eat more kale and broccoli though, might be good for my bones and guts