Enough Pred for the life you lead

[Mayadill]

We know about ‘sick-day rules’ and there’re loads about increasing for special events, dentist, travel, surgery, but I haven’t seen anything like as much about the relationship between normal life and Pred dose and people’s normal varies so hugely, some still working, caring for an OH, permanent stress normal, just how life is.

Pro said recently:

I'd blame the stress. It can have a massive effect on the immune system and when my husband was ill and later dying I needed more pred to keep on an even keel physically, Never underestimate it.

(1) I’ve upped the Pred, reduced back down but the pa... - PMRGCAuk (healthunlocked.com)

The other thing that sparked this post was a particularly awful story from a lady, sorry, didn’t save and can’t remember who, who was being browbeaten, nagged and generally harassed by her doctors to reduce when she had terribly difficult domestic circumstances and what she actually needed was lashings of TLC, possibly practical support – and Pred.

Maybe it should be written into the Guidelines: ‘A particularly emotionally and/or physically demanding life may make it near-impossible for some patients to taper.’ We’re all different and I’d guess it depends somewhat on how you feel about the stress and the cause of the stress, whether you feel overwhelmed, whether it’s someone you love, and I’d guess also it doesn’t matter at higher doses. First thing I did after coming out of hospital was sleep properly in my own little bed. Second thing was sorting some rather hairy financial stuff. It didn’t make the slightest difference to my PMR, but then I was on 20 mg for seven weeks, Pred coming out of my ears, so why should it.

Despite other things being equal, no other conditions and no other meds, nice plain basic PMR, I’d see it as completely crazed to see any equivalence between my calm, contented and almost entirely obligation-free life and that of someone constantly on high alert, at action stations. We’re not on the same page, we’re not in the same continuum.

I read, write and faff around in Photoshop, go for short walks, and bar the occasional mishap under the umbrella ‘that’s life’ see and communicate only with only people I want to see and communicate with. Apart from housework I don’t do anything I don’t enjoy and want to do, and even then, being disabled, I rather enjoy finding ways of doing things I shouldn’t otherwise be able to do. Occasionally using my full-size upright carpet shampooer is one. A day it feels like an ordeal, I don’t do it. A day it feels like fun, I do it. My one and only external obligation is my routine blood-test every two months. Oh, and I sometimes get very cross at packaging, especially child-locks. I’m neither fighting nor fleeing and it seems to me my need for cortisol must be close to baseline, that needed for normal biological functioning.

[PMRpro Ambassador]

I think Dejaco addresses that to some extent in this paper:

ard.bmj.com/content/early/2...

Whatever the symptoms are caused by, the treatment is much the same: enough pred.

[Mayadill in reply to PMRpro]

Interesting. Couldn’t see anything about individual lifestyle.

The word ‘relapse’. I’ve had two flares and only count one for the purposes of this argument, since the other was mixed up with vaccine woes, my PMR was being severely messed around and well within its rights to howl about it! But I don’t think of that one flare as a relapse, i.e. an increase in disease activity, but just that I was no longer taking enough for my needs with disease activity unchanged. If you make demands on something that simply isn’t there, you can either make fewer demands, in many human situations impossible, or increase the Pred.

If I'd known then what I know now, I shouldn't have let myself flare, but I was a newb.

I have just somewhat unnerved myself my mapping my Pred dose to my financial stresses. 10 mg was rather clearly the magic number here enabling me to deal with what I had to deal with.

Spring 2020, acute as in how to pay the rent but 20 mg. Possibly also an element of being on a high of pure relief. All I had was PMR when I’d thought having been paralysed might mean something had gone wrong with my spinal fusion.

Got that sorted but not long-term solution, a lingering background problem requiring repeated interactions with persons I really did not want to interact with.

Autumn winter 2020 flared at 10 and back to 20.

Again happily came down as far as 10 mg spring/summer 2021 and stuck there for about a year until (surprise, surprise) spring 2022. In March 2022 I finally got everything sorted, after which mooched happily down to 5ish/4ish, only to be stopped in tracks by the jab, after which unfortunate interlude now mooching down again

And to edit this a day later with an after-thought, I see that the authors of the paper are all for engaging the patient and more power to their elbows, but they are not alas the totality of the rheumatological community.

I find it frankly worrying that the term 'relapse' as i have defined it, an increase in disease activity be used as an umbrella term to cover - an increase in doctor activity! just a little bit too like, not us, mate, we didn't do nuffink, when the sole cause of someone's increased pain and other symptoms is forcing the patient onto too little Pred for an unchanged level of disease activity.

What does 'inability to taper' mean? it may mean a number of nasty things that need to be crossed off the list and i am intensely grateful for and appreciative of having been very thoroughly investigated.

But it also means the disease hasn't lessened according to the schedule on the Website, and well, I mean, bless, its a disease, it can't read, it doesn't understand it must obediently need 2.5 mg or 1 mg less per month cos it says so in the regulations.

[Alebeau]

I agree with you on your very insightful words

"Maybe it should be written into the Guidelines: ‘A particularly emotionally and/or physically demanding life may make it near-impossible for some patients to taper.’ We’re all different and I’d guess it depends somewhat on how you feel about the stress and the cause of the stress, whether you feel overwhelmed, whether it’s someone you love, and I’d guess also it doesn’t matter at higher doses. "

I am I believe in that group as I continue my struggle with stress and very slow taper of prednisone - 13 mg after 4 years and 8 months. I really don't think I will ever be prednisone free for the rest of my life. And I'm ok with that.

I thank you for sharing.

[Mayadill in reply to Alebeau]

Hi, Alebeau, thank you! Steady as you go. So long as you're doing OK and no SE, pressure to taper and get off Pred is just another stress people don't need, for which some doctors are in no small part to blame. I think I shall get off Pred but since according to routine monitoring it doesn't seem to be doing me any harm to speak of (after 3 years) and since the lower the dose the less likely it ever will, I am really not that fussed at the prospect of say a couple of mg a day for ever.

[Alebeau in reply to Mayadill]

SE ?

[Mayadill in reply to Alebeau]

Sorry! Side-effects.

[Alebeau in reply to Mayadill]

😄 didn't find that in GoogleNo serious side effects, yet, keeping an eye on bone density every 2 years as it is slowly declining.

[Gossiplady]

hi Mayadill! Great to read your feelings. This forum is wonderful. I agree emotions are so important with PMR. I have had this awful disease now for just over 2 years. My doctor at the start was wonderful, now gone, and she said virtual lockdown was the safest way to live, saves flares and an awful lot of stress. I live alone, but have marvellous neighbours. As you say you adjust to a completely new lifestyle. I ignore people who are not on my wavelength, and if I am too tired I just go to bed. Wonderful. Have now tapered down to 1mg no stiffness, just pain from a fractured spine in 3 places 10 years ago. Have cocodamol for that. Also use a Tens pen (ordinary Tens didn’t work) which is very successful. Mentally I am settled with this lifestyle, having interests which are new, and content. Keep smiling my dear, life is beautiful,

[Mayadill in reply to Gossiplady]

Hi Gossiplady. Oh your poor back. Fond of spines as i have a metal rod in mine but fortunately no pain. Yes, one of the jolly things about living alone is if you decide to do something substantial such as sort out a load of old papers, you can just stop and walk away if you get overcome by tiredness.. Provided you haven't spread the papers over the bed, of course. Life is good.

[Gossiplady in reply to Mayadill]

bless you.