The right decision?

[jayemmemm]

After 4 years of PMR, I have reduced (with 2 flares along the way) my Pred to 5mg using DSNS at half mg intervals. Sadly, I am now but a shell of my former self, with zero energy and constant (though moderate) pain in both wrists and upper arms. Approaching my 90th birthday in two months, I sought medical advice from my newly allocated GP who I first met two weeks ago. I gave her a list of my co-morbidities, hoping to discuss the most important ie PMR and current pred dose. She declined any discussion until the results of a blood test were known. The results are now available and are marked 'tell the patient normal' in every case although some of the red blood info is outside the normal range, pointing to anaemia. The earliest date for f2f is 13 Nov.

So....I have decided to increase Pred to 10mg to regain QOL My life expectancy is 4 years and were I to continue DSNS I could at best expect two years of life without Pred and possibly just one year of recovered adrenal output. Of course, I could live much longer.

What do you wise members think? Best wishes.

[PMRpro Ambassador]

I have said from Day 1 that Quality of Life is my primary consideration! If I need another couple of mg to feel well and free of pain then I need that other couple of mg.

I am lucky at present in living where I do with a rheumy and a GP who agree with me - as do my 2 cardiologists. I will return to the UK in the next few years and, to be honest, my greatest reservation is the prospect of meeting doctors who are desperate to get me off pred and potentially losing access to the Actemra that has enabled me to reduce the amount of pred I needed from nearly 20mg to 7mg. Lower than that and biceps tendinitis makes use of my arms almost impossible - I suppose I might manage to lose weight! - and at 6mg I am struggling with adrenal insufficiency. Neither is particularly practical when you live entirely alone with no family support,

[jayemmemm in reply to PMRpro]

That was quick - many thanks - as you say, living alone is an important complicating factor.

[DorsetLady PMRGCAuk volunteer]

Quality of life is paramount- at any age. Would say a lot is down to your adrenals struggling - so an increase will help them., as you imply arms and wrists probably PMR, so maybe go to 10mg initially and then maybe aim for 7-8mg … for as long as you need.

If time and your PMR permits you may get lower, fair dos, but being out of pain is more important.

As my late husband once said … “what’s the point of living to 100 if the last 10 or 20 of those years are riddled with pain and make you miserable… that’s not my idea of living!”

🌸

[jayemmemm in reply to DorsetLady]

Thanks, DL. It's good to know I'm on the right lines. Best wishes

[PMRpro Ambassador in reply to jayemmemm]

Well - WE think you are!!! There are no doubt doctors who would seek to disagree since we require pred to stay on those lines!

[DorsetLady PMRGCAuk volunteer in reply to jayemmemm]

Best wishes to you as well… and enjoy life… maybe not quite to the full.. but as full as is possible… I intend to! 🤣😂

[Suet3942 in reply to DorsetLady]

That is so true DL! I am now down to 2.5 mg pred after successfully following your slow taper (thank you). In my heart I know I don’t really want to taper any more as I’m in quite a lot of pain with my back and knees which I know the pred has been masking. Ive been seeing a new rheumy who is quite elderly after my lovely Dr Farouki left last year. This rheumy is quite kind but I feel he’s not as caring. He’s taken 6 months to agree to guided injections for bursitis which was done immediately by Dr F. Now he wants me completely off the pred. I quoted Prof Dasgupta saying he keeps his patients on 2 mg and he looked shocked that I even knew who he was. I would rather have quality of life than be in greater pain than I’m in at the moment. I don’t suppose he’s used to patients challenging him !

[DorsetLady PMRGCAuk volunteer in reply to Suet3942]

Good to hear tapering plan has work… and agree if he’s of the old school he maybe doesn’t expected patients to be knowledgeable or challenging.. but at the end of the day it’s your body and your life. Good luck with your endeavours to stay on a small dose.

[Suet3942 in reply to DorsetLady]

Thank you. I’ll need it 🤞

[Stills]

My lay persons advice is take the pred enjoy the years and bu**er the dr

[jayemmemm in reply to Stills]

Many thanks, Stills. I shall certainly take the extra pred and hope to enjoy the years, but I'm not so keen on your last suggestion!

[DorsetLady PMRGCAuk volunteer in reply to jayemmemm]

🤣😂

[Potemkin]

Quality of life is paramount and if you can be without pain I would definitely take it. I hope your Dr agrees.

I've had a conversation with my mum's Dr about my mum (89) and we've agreed her quality of life is of the most importance so whilst not great for her, her nightly whisky or two will continue. Mum also has a Respect form in place.

I hope you can be out of pain as much as possible and that your Dr enables that.

[jayemmemm in reply to Potemkin]

Many thanks, Potemkin. Best wishes