Has PMR gone?

[Lclmlbls]

I’d be grateful for anyone’s thoughts or suggestions. During the past couple of months I have been through the most stressful time of my life. A few weeks ago my mother was given days to live but she pulled through. During the last few days she developed a condition which has culminated in her being admitted to a nursing home- a situation which is her (and my) worst nightmare. She requested to be at home for her last days. Everyday is a challenge: until my daily visit I never know what her condition will be - no two days are the same.

If anything would trigger a flare, I would have thought this would. I’ve only had one flare brought on by stress about 6 months ago on my return from a holiday which caused me to increase pred temporarily - a drop in the ocean compared to this.

I was diagnosed in Feb 2023 and started on 15mg. I’m now tapering to 2mg on a 5 week taper.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your mother and the stress you are under.

Not sure we can say your PMR has gone… no one can tell until you are off Pred for a few months and no symptoms…

But would just say don’t reduce for now and just be aware although you are okay at the moment, you may get a reaction later [do hope not, but one never knows].

All the best.

[SnazzyD]

Oh my goodness, that’s a lot of stress! Do try to take care of yourself. It is easy to battle through at the height of the storm but effects tend to be delayed, even months after. Unfortunately, you won’t know if your PMR has gone until a number of months after you have stopped Pred. How many is unpredictable but 4-6 months seems to be a time when people show up here again, but really you ne ver quite know. Sorry, I haven’t come out with the bunting at this time. It’s one of those one day at a time situations as always really.

[PMRpro Ambassador]

So sorry to hear about your mum - it is so hard.

At 2mg you are on plenty to deal with low activity disease - and while it may have gone, you can't be sure. 2mg is low enough to have allowed a return of adrenal function AND be suuporting it. I think you just have to proceed with care and see what happens.

[Angelsmummy]

So horrible what you are going through,sounds so very tough.Remember to take care of yourself TOO!This disease has a habit of creeping up and biting you when you least expect it,and oh how it loves stress!Really hoping things improve for you L, Sincere best wishes to you,and no doubt everybody else on the forum will be thinking the same for you too.xx💐🌷

[Lclmlbls]

Thank you all for your kind words and support. In her more lucid moments mum is asking to come home. It would be easier for me if she stayed in the home, but I am not comfortable with that situation as she is so unhappy. I’m hoping to find a way for her to return to her own home, but not sure if it will be possible due to her unstable condition.

[PMRpro Ambassador in reply to Lclmlbls]

And end-of-life care at home without the right hospice support is very very taxing. Be sure you have something in place - at the very least to cover nights because you cannot burn the candle at both ends for more than a few days. Unfortunately, many at-home hospice services are being cut so you are left alone. I was struggling before but without my daughters, one a nurse with experience of EOL and the other who worked as a paramedic and now the ED, the last week would have totally finished me.

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

Agree with PMRpro… my hubby was at home in the last few weeks with terminal cancer, whilst I still had GCA, but we did have excellent support from the local hospice. He was also lucid and mobile until the very end. But that was in 2013.. not sure it could happen now.

[PMRpro Ambassador in reply to DorsetLady]

A friend nursed her husband to the end recently - initially with fantastic hospice assistance but it was cut totally about 2 weeks before he died and there was nothing except the practice/district nurses for support. They were good but not always there on time for the morphine driver adjustments.

[Angelsmummy in reply to Lclmlbls]

You must do what is best for her but also for yourself.Is there anybody family wise that could share the load if she were to come home?What a conundrum for you and no doubt one that will play on your mind for a long time.Apart from the forum,try and get yourself somebody to offload to now and again,plenty of charities willing to lend a sympathetic ear.But remember,we are all here if you want to “ offload” Sending warm thoughts to you L.xx🌷