How to tell your PMR has gone

[Trulyscrumpious]

I,ve had PMR for 4 years. I’m down to 5mg and have got stuck there. I also have osteoarthritis so get aches and pains in other places too. If my PMR does decide to go will it be as suddenly as it came ie overnight! Or will I gradually realise i’m less tired ?

[Soraya_PMR]

I don’t think you’ll really know until you get to zero, stay at zero, and PMR doesn’t bite you on the bum!

Why are you stuck at 5? Is it PMR resurgence or adrenal insufficiency that keeps you there? Has anyone suggested an ACTH stimulation test?

One day last month I felt WELL, for the first time in about 3 years. It was glorious. (Since then things have gone a bit pear shaped!) But I’m hoping that well days will repeat and repeat until maybe one day they’ll exceed the typical PMR days. That’s my hope, and then I think I’ll be on my way to remission.

[Trulyscrumpious in reply to Soraya_PMR]

Thanks Soraya, if I go below five my shoulders start to ache. So I can see you are right. I’ll have to hope I can finally reduce to no pred. Patience!

[DorsetLady PMRGCAuk volunteer in reply to Trulyscrumpious]

In that case, I would say PMR still active. Unless it’s OA, but you can usually tell difference - especially if OTC painkillers help.

A slower taper, 0.5mg a time and this might help you get lower-

healthunlocked.com/pmrgcauk...

but if your PMR needs 5mg at the moment - that’s what it needs. However, that doesn’t means every so often you try and reduce!

[Trulyscrumpious in reply to DorsetLady]

Thanks, i’ll try going to 4.5 or is it just as good to take 5mg one day and 4 the next?

[DorsetLady PMRGCAuk volunteer in reply to Trulyscrumpious]

try 4.5mg - the difference between 5mg one day and 4mg the next doesn't sound much, and I know some Rheumies recommend it, but I think its upsets the body and you.

[Trulyscrumpious in reply to DorsetLady]

Thanks

[Suffererc in reply to Soraya_PMR]

Hi Soraya

I have had PMR for 18 and am at 7 - 7 1/2 mg. but that happened to me last week, I was out walking and just thought I feel normal, my legs were movingly normally without any niggles, but next day it was back to the niggles. So I am too hoping those days will happen again and for longer. Good luck.

Thought I was having a brain storm at the time 😂😂😂😂😂

[Soraya_PMR in reply to Suffererc]

Weird isn’t it? To feel good after so long under par?

Here’s to the next non-niggle day 🥂

[Trulyscrumpious in reply to Suffererc]

Hope you get lots more of those moments. Good luck!

[jinasc]

Ask your medics to arrange a Synacthen Test - this will see if your adrenal glands are waking up. Push for it...............sometimes they are reluctant. The best time to have the test is when you are down below 7.5mg and even better 5mg.

[Trulyscrumpious in reply to jinasc]

Seeing my GP soon so I’ll ask her. Thanks

[PMRpro Ambassador]

No way of knowing really - it may disappear overnight but you are still on pred and have to reduce the dose slowly to get your adrenal function to return and take over. And if you are below about 5mg the fatigue may be more due to that than to active PMR.

But people do say that they feel "different" at some point before they are able to reduce the pred relatively easily. The figures available are more to indicate the time for which pred is required - which is not the same as how long PMR lasts.

[Trulyscrumpious]

Thanks PMRpro, fora helpful reply- you always seem to give sound advice