Does anyone else fee like this ?

[Crystal-Park]

I’ve had PMR for three years and started on high dose then gradually over time reduced to three mg ,Ive had a lot of stress lately and had a relapse .Sore shoulders aches in neck and back of head.Couldnt pick a brush up etc .So today I’ve gone back up to five in desperation.Why do I feel so deflated ,just think I’m never going to get of Prednisone ,Does anyone else feel like this ?

[SheffieldJane]

Yes I have felt like that. I am sure a lot of us do from time to time, not many experience a totally smooth run down. Stress can just ambush us. Feel better soon. 🌺

[Crystal-Park in reply to SheffieldJane]

Thank you hope so

[Highlandtiger in reply to Crystal-Park]

Yes me too. I find it amazing just how quickly your condition deteriorates when you get hit with unexpected stress.

[DorsetLady PMRGCAuk volunteer]

I think most people go through feelings like that, particularly if they suddenly have a flare (undoubtedly caused by your recent stress) after plodding along fairly uneventfully.

You will get off the Pred one day, but not until your PMR is ready to let you....and you just have to come to terms with that. For some it’s easier than for others, but it will happen.

I don’t know if your doctors gave you any indication of how long that would be, sometimes they are overly optimistic- but results show that on average it’s just under 6 years - so you may have a little time to go.

Stay at 5mg until you feel better - and then maybe try a slow taper - similar to this -

healthunlocked.com/pmrgcauk...

And although you aren’t a new patient you are new to this forum -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Often - after 15 years of PMR and over 10 years of pred. But it is not that much of a problem as long as I feel well with regard to the PMR - I had 5 years of untreated PMR and THAT was awful so being on pred isn't a bad thing as far as I am concerned. I take what I need - no compromise. I'm lucky in that I have a set of doctors who also accept pred gives me a pretty decent life so don't nag to get below the 10mg that seems to have been my "spot" for most of the time. I did get to 5mg before the vasculitis woke up a bit.

More limiting has been the atrial fibrillation - and there is not a lot that can be done about that. It is part of the reason I need 10+mg pred - for a time I needed 15mg so even the current 12mg I'm using to damp down bursitis isn't too bad and it is just one dose compared to the other 6 I have to plan in the day.

It is all a matter of perspective - honestly.

[Charlie1boy]

I think we've all felt like that at some stage! I'm just coming up to five years with PMR, and am now down at 1.5mg pred per day.

The biggest help to me was when I read the Mayo report on PMR, which gave the average length of time for PMR treated with pred as 5.9 years. This immediately reduced my expectations of getting off pred asap, and I quite simply have stopped worrying about it. The PMR will go into remission - hopefully - when it is ready.

The difficulty is that the health professionals almost always are trying to get us off pred as soon as they can, but, as you are discovering, that is not straightforward.

It's very easy to say it, but just try to be patient. You WILL get there, as I hope I will!

Good luck

Paddy

[Crystal-Park]

I just have to be patient and not expect miracles .Hopefully one day ! Thanks

[scats]

I am right there with you. Over the last year my pred use has had to increace as I cope with the stress of my husband's illness. It has been so hard to be able to do less than I could 2 years ago.

Last week he went into hospital to try and sort out his problems. I have had three days of reasonably stress free resting and the difference is amazing. PMR symptoms feed on stress.

Take care of yourself we are both going to get through this.

[Crystal-Park in reply to scats]

We sure are

[PMRpro Ambassador in reply to scats]

Awful though it may be to feel one needs a husband-holiday - I'm right there with you!!

[scats in reply to PMRpro]

Thanks. I realise you've been here too.