PMRGCAuk

Thoughts on Pred and the underlying illness

Tapering is not a race to zero given that judging the right dose is a finely judged trial-and-error attempt to find the lowest dose that maintains the initial level of symptom relief. How do I see the process of living through this illness?

The dose of Pred is not a direct measure of illness progression but an indirect, or proxy, measure. By this I mean that, simply put, that the AI syndrome is chugging on its merry way, downwards hopefully. In the meanwhile pred eases the symptoms and takes pressure off the body, so helping to facilitate the process of recovery.

So, being able to manage on progressively lower doses just indicates the likelihood of illness abatement. Of itself a lower dose means little.

Now, illness progression is negatively effected by concrete events like stress, overdoing things etc, and by the seemingly random vagaries of PMR.

It follows, therefore, that art of tapering (it's not a science!) is about tying dose back to underlying symptoms.

Being driven by a relentless need to get off pred thus seems pointless unless the symptoms remain stable (ie when the pred is tracking the underlying illness reasonably closely).

Of course, there are secondary issues such as adrenal laziness at lower level etc.

So, I'm not minded to struggle through a reduction - it doesn't mean anything. BUT, recognising that it indicates a slowing of illness abatement means I stay at a comfortable pred level and concentrate on strategies to support the illness itself eg more rest, less stress,continual diet refinement, TLC etc.

Well, that's just my perspective.

M, 69, competitive athlete until dx, 6 months since dx, comfortable even progress ie no change in symptoms, start 15 mgs - currently DSNS 10.5 to 9.5.

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Greetings, stravaman, thanks for your Post :-)

I think you've summed-up the often ambiguous / confusing PMR / Pred process very well, and I'm sure the 'Aunties' (experts / veterans) here will agree with your take on things.

I agree: there are so many variables in the management of the PMR (and GCA) disease process that can, and often do impact on the efficacy of the Preds that are intended to manage it, but which some GPs (and even some Rheumies) overlook when advising a 'standard' reduction. regimen.

So, as you say, the personal process for coping with, and PMR / Pred tapering is often more of an Art than a Science, and down to an individual's context and judgement - and hopefully assisted with the support of an informed and thoughtful medic.

MB :-)

M. age 60, Dx PMR late 2015, previously very fit and active / athletic, started on 30mgpd Pred, now at 2.5 and holding steady :-)

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Nice to see you Mark! The rumours were greatly exaggerated then.

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Thanks Jane! :-)

Yep, I've kept my head down for a few weeks due to spending much time getting THAT silly book ready for a Global Launch (ha ha, as if!). More to come very soon, thanks for remembering me :-)

MB x

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Nobody would forget you Mark! Looking forward to the book. Perhaps you could serialise it on here?

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Well Jane, I already have in a way. It's a compilation of my Posts here over a couple of years, with a few added bits about my PMR Journey and this community - nice ones of course! ;-)

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Humour can often further a cause better than anything else. This disease needs to be better known. There are too many people floundering around with ill informed, inadequate treatment. This forum is just the tip of the iceberg and we are the pro-active ones.

Well done you!

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That's a good summary Stravaman. I would only add that initially we are prescribed a much higher dose than we need , a bucket of water to put the flames out, in a sense. Then it is a gradual mission to find the lowest possible maintenance dose. An art indeed.

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Thanks Sheffieldjane. Absolutely, it's an observation I should've made. The higher initial dose leads to the level of symptomatic relief we continue to aim at. Alan

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Couldn't have described it better myself Stravaman!

Male, 77years. dx Dec 2014. Last week was tapering 5 to 4.5mg, but now at 6mg.. Nearly all my problems have been when below 10mg.

Have still tried to keep active, racquet ball once a week, and bell ringing three times a week, but it can be a struggle. I think the mental, psychological benefits of getting out and doing something outweigh the subsequent aches and pains!

Good luck

Paddy

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Well said Paddy :-)

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Loved your post. Just what I needed to stop me starting to be impatient with PMR/GCA Nov2016. Have managedto reduce to 29.5mg but 3weeks of slow taper to 29 is not happening. So back to staying on 29.5 for a while longer.

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Stravaman that was so beautifully put I have copied a few of your phrases into my notes on my mobile for future use when I am asked about my illness. I have come to the same conclusion that the dose is not that important except as a guide. Why are the simplest things so hard to grasp.

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Needed your post this morning. Started at 25mg in June, back to 15 now 16. Symptoms of initial diagnosis are reminding me of the gorilla in the room. Travel planned for the coming weeks. Not enjoying this part of chronic illness.

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I tend to agree with you. I don’t sweat it and just continue to tritating down. I have to go up one or two mgs once in a while, but it is what it is and I let my rheumatoid doctor know when I have symptoms. He will then advise me. (I seem to have a problem every time I am down to 5 mgs). I too strive for a better diet, good exercise, and an overall positive outlook. The prednisone has helped me so much. While in a perfect world we would not need any medication, I accept what is. I have been on prednisone for almost a year now.

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That is telling you that 5mg (or possibly a smidgeon more) is "your" dose. For now at least. It may get lower...

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Absolutely - my sentiments exactly!

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