How long is this journey?

[Janet57]

I am 66. I was diagnosed in January 2013, prescribed 20mg Pred and advised by GP it would last about 2-3 years. It’s now more than 6 years. I’ve learned to live with PMR and it’s not all been bad. A few bad times but we’ve all had those. Having put on weight early in this process and the moon face that came with it I’ve in the last 2 years lost 3 stone, started exercising - aqua, limited gym and cycling - and feeling better for it. I think that a stressful job, two postgrad degrees and pushing myself too hard early on took its toll. I’m now much kinder to myself. Gave up work December 2016 which was for me the right thing to do. I’m at 3mg but when I reduce further I feel some of the symptoms returning - I panic and increase by 0.5 or 1 and things stabilise again. Not sure what to do. Latest ESR shows 25 (was only ever 40 max). Dexascan shows minimal damage thank goodness. Can anyone advise. My rheum wants me to push to reduce the Pred. Thanks to everyone on here for what has been invaluable advice and support.

[Hidden]

Morning Janet,

Welcome 🌷

Sometimes l wonder why Rheumatologist’s want to keep pushing us to reduce when obviously 3mg is your dose that holds everything at bay, the PMR has a mind of its own, it will go when it’s good & ready.

You seem to have found a balanced life & to upset it when you’re down to 3mg feels very unfair.

Maintain your dose until you see him next, as there is still the issue of the Adrenal Glands to fully wake up which may be the main reason you cannot get below 3mg

Kind Regards

MrsN

PS as a Moderator, l can amend the typo for you if you wish, just let me know 😉

[Janet57 in reply to Hidden]

Thank you MrsNails - if you could amend the typo that would be great. Thanks too for the advice

[Constance13]

Don't despair - you are not alone! I believe about 5% of patients have long term PMR (over 5/6 years). (Is the percentage right Eileen??)

Not good news when you are one of them!

The difficulty is accepting this. I was 'determined' to be off pred after 3 years (that was four years ago)!! I am stuck on 4 mg and, I fear, will be stuck on that for life. But on 4mgs you don't have many side effects and they give you a certain quality of life. Why change it?

Good luck. 💐💐

[Janet57 in reply to Constance13]

Sounds like good advice .... it’s hard ignoring my Rheumy 😱

[Constance13 in reply to Janet57]

Yes, we all feel "they must know best" - they don't!! Their knowledge is based on books only, NOT patients!

For 3 years I listened to my rheumy, then, thank goodness I found this site.

We'll get there! It just takes as long as it takes.

[Soraya_PMR]

From latest research, PMR on pred average is 5.9 years. Which means some lucky souls will be off pred in 18 months, and some will take longer.

I think if I was stuck at 3, I’d try to lessen the pressure of getting down to the hallowed zero mg. I might just decide that 3 is my dose and decide to stick there for 6 months and just forget about reducing. Give yourself a break and that relaxation might do the trick.

You say you don’t have any worries re osteoporosis, and 3 mg is below the body’s natural production, so don’t worry, chill-out for 6 months then try again.

Plus ESR at 25 is a smidge high. Don’t rock the boat! You sound as if you’ve got a good QOL, surely that trumps 0mg and possible pain/stiffness/lethargy?

[Janet57 in reply to Soraya_PMR]

Thanks Soraya x

[Hidden]

Hi I do think the rheumies are bonkers sometimes. If it needs 3mg at the moment it need 3mg, you might need it for a while or the pmr might be fizzling and it gives your adrenals a Chance to wake up. . Glad you feel otherwise ok. If it ain't broke....

[Janet57]

Thanks Poopadoop - I might just slow things down a bit before I try to reduce again

[PMRpro Ambassador]

Ask your GP if they will manage your scripts and stick at 3mg with the occasional attempt to reduce 1/2mg and see what happens - just never let it get out of hand. Your rheumy is being silly for the sake of being silly. 3mg is such a low dose you would be fine on it for years - and if that is all it needs for a good quality of life, he should be grateful.

The median duration of pred management for PMR is 5.9 years - 5% of us have PMR for much much longer, some for life.

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are two different articles about the same research - quite comforting for anyone as they found only 58% of patients were off pred by 10 years after disease onset. And a paper that needs to be shoved under the nose of any rheumy who objects to a patients being on 3mg pred.

[Janet57]

Thanks PMRPro - interesting reading. It’s easy to start wondering if there’s any other underlying issue when you can’t reduce further. I think I can manage the Rheumy now.