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.
wife of Long term PMR sufferer : Hello. I am not... - PMRGCAuk
wife of Long term PMR sufferer
![Whitesmith86 profile image](https://images.hu-production.be/avatars/3a303a5b21f148108041a66b278583e2_small@2x_100x100.jpg)
![Whitesmith86 profile image](https://images.hu-production.be/avatars/3a303a5b21f148108041a66b278583e2_small@2x_100x100.jpg)
hello and welcome to this forum.
![DorsetLady profile image](https://images.hu-production.be/avatars/37bb6f16-7f5c-4826-80b7-4eb51bca8c53_small@2x_100x100.jpg)
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
EDITING YOUR POST
Can be done at any time, not just at outset.
Underneath your post you will see options - Select "More V".. from options select Edit. You will then get your post in draft format. make your adjustments - and then select Post. Job done.
![PMRpro profile image](https://images.hu-production.be/avatars/0552c0a893f8293c57ee1b3703b6cef8_small@2x_100x100.jpg)
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 profile image](https://images.hu-production.be/avatars/37bb6f16-7f5c-4826-80b7-4eb51bca8c53_small@2x_100x100.jpg)
Thanks for editing title - have raised the issue with HU - but not really expecting a quick or even sensible answer..🤦♀️
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.
Yes he has. He is very determined to get off them. A bit too determined sometimes and refuses to give in with work.
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.
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.
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.
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.