wife of Long term PMR sufferer

[Whitesmith86]

Hello. I am not the one suffering from PMR. It is my husband. He is 59 and has had PMR since the summer of 2022. He started with symptoms after having Covid and had to do on 40mg prednisolone before he felt any benefit. He works full time as a sports coach in a school so has little time to rest. I manage his drugs and do as much research as I can to try and understand this awful condition so that I can help. He has a very good diet, no caffeine no refined sugar no alcohol doesn't smoke. He has noe managed to reduce to 5.5mg a day flirting with 5mg probably once a week atm.

[Koalajane]

hello and welcome to this forum.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

Sorry to hear about your husband.. and good job he's got you as his social/medical secretary 😂🤣

Just needs to be aware that at his dose, his adrenals may come into to play.. so the slower the reduction probably the better, and he may find they are struggling a bit at times... so just watch his flirting 😏

HU seems to be getting itself in a tangle recently - and I'm going to nag them in a minute - but a name seems to have come up as a title in this post [you're not the first this has happened to] - so perhaps you could amend it to more meaningful title please. See here - thanks

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[PMRpro Ambassador]

Hi and welcome!

I agree with everything DorsetLady has said - nothing new there then!!!!

There is evidence that Long Covid and PMR have a great deal in common which may be the reason he needed such a high starting dose. If he has been able to continue working as a coach he has done really well. And so have you as consultant and secretary!

[DorsetLady PMRGCAuk volunteer]

Thanks for editing title - have raised the issue with HU - but not really expecting a quick or even sensible answer..🤦‍♀️

[PMRpro Ambassador in reply to DorsetLady]

Even expecting an answer seems optimistic!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well you know me - ever the optimist!😏

optimist

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

... and I quote -

It's possible that recent platform updates may have contributed to these problems.

Well there's a surprise then! Not...

[PMRpro Ambassador in reply to DorsetLady]

Eejits ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Undeed…

[piglette]

I don’t know how your husband can work as a sports coach, I could hardly move when I got PMR. 40mg is a very high starting dose it is normally around 12.5mg-25mg. No stress and rest are important for PMR. He has done well to get down to 5.5mg.

[Whitesmith86 in reply to piglette]

Yes he has. He is very determined to get off them. A bit too determined sometimes and refuses to give in with work.

[DorsetLady PMRGCAuk volunteer in reply to Whitesmith86]

The problem with that approach is that sometimes it can be the worst thing to do… it can prolong the illness and he’ll end up taking more Pred, and for a longer period.

I can fully understand he wants to return to a normal life…but unfortunately he doesn’t necessarily have control over that.. the PMR does.

[Whitesmith86 in reply to DorsetLady]

I agree but he has always worked through it even at its worst. Mentally it would be very damaging to give in to it for him personally We are all different I suppose and deal with things in our own way. His aim is to be off meds by the 2 year anniversary.

[DorsetLady PMRGCAuk volunteer in reply to Whitesmith86]

He doesn’t have to ‘give in’ to it…. many think that… but he needs to manage it for however it lasts. .. and neither he, nor his doctor nor us can tell him that.

We all wish him well with his aim, but it may not be as easy as he’d like, that’s all we are saying. .. and if that doesn’t happen, you have to deal with it as well.

[PMRpro Ambassador in reply to Whitesmith86]

It is not giving in - it is taking control, And stopping pred may be the opposite of taking control as it may let in a flare that will put him back where he was when it all kicked off. and needing to start all over again.

If he is lucky he will be off pred - but only 1 in 3 are off in 2 years. A majority take longer.