nearly there

[Crochetgirl65_]

After nearly 10 years of prednisolone I am down to daily dose 0.5mg,/ 0.5mg /zero (recurring). I am feeling fairly tired most days and on bad days I have joint pain, slight nausea which is cured by two paracetamol and going back to bed. I am unsure if I should keep going and my system will eventually stabilise or should I go back a dose and try again in a few weeks? I have a GP who thinks this is all nonsense and at 0.5mg I should be able to just stop now.

[PMRpro Ambassador]

What would we do without such gems of HCPs! Luckily we know better than him,

Don't know, hard one isn't it? Where did you feel really well? How long have you been this low? Without going through this you won't get to the shore of no pred but maybe it would be more comfortable with a tiny bit more pred which shouldn't affect the adrenal's learning curve.

[Crochetgirl65_ in reply to PMRpro]

Thanks so much for your reply. I have been on this dose for 5 weeks. Previously on 0.5mg every day. I think I was doing ok until my husband had a fairly major heath scare and I was extremely stressed for about a week. Maybe that has upset things?

[PMRpro Ambassador in reply to Crochetgirl65_]

I think it almost certainly has - never underestimate just how much something like that affects us. I am still at 5mg - should be fine you'd think, but I still get days with a reminder of the time my husband was so ill before he died and it leaves me feeling quite shaky. This week - tax and other joyful things, not difficult but only me to do it and I really feel the effects.

[SheffieldJane in reply to PMRpro]

The work following a bereavement is relentless. After my mother’s death I still feel shaky when I reluctantly look at my own on-line bank account. Her affairs were horribly complex and irregular and telling, She had dementia and had been taken advantage of over the years. It heralded my PMR I feel sure. I really feel for you doing the work on your own. It can feel like a repeated assault. I had a lot of help from a very grounding solicitor but it cost the estate thousands.

[123-go in reply to SheffieldJane]

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[123-go in reply to PMRpro]

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[DorsetLady PMRGCAuk volunteer]

Hi

Well your GP is wrong -as many have discovered 0.5mg can make a big difference. But it does sound as much your adrenals stuttering as your PMR causing issues… and if so, then GP could be more helpful and offer a simple basal cortisol test to see how they are doing. After 10 years I’d be surprised if they weren’t struggling.

I’d be inclined to ask for test -and meanwhile go back to 0.5mg a day -then when you try tapering again -introduce the zero on one day in the first week , then on 2 days in second week (although not concurrent), then 3 days and so on until you get to zero every day. To make it even slower repeat each week -so it takes 14 weeks…

[Crochetgirl65_ in reply to DorsetLady]

Thank you so much for your advice. Once the tears have gone, not helpful I know, I shall re-group and start again! The new schedule you have offered sounds a lot better so I shall follow that. I have a Rheumy appt on the 18th so maybe I can get a test done then? I think I’ll call the Rheumy nurse practitioner and see if she’ll ask my surgery for one. A few thoughts….

[DorsetLady PMRGCAuk volunteer in reply to Crochetgirl65_]

Tears -typically adrenals stuttering..

[SheffieldJane]

Well done on your taper and we never underestimate the power of tiny doses.

I am sorry your doctor is taking this attitude. Obviously, to us, this could well be a problem with your Adrenal function that needs to be addressed. An informed doctor would arrange a morning Basal Cortisol Test and if this showed a struggling Adrenal system then on to a Synacthen Test at the Endocrinology Dept. Of the hospital. Neither test is very invasive ( monitored blood tests without Pred. Mostly).

An Adrenal crisis is a real danger at the end stage of treatment on a low dose or no Pred and simply must be taken seriously. Please insist on these precautions from this GP or another in the practice. I would even, with a heavy heart, consider Accident and Emergency. Certainly 111 could advise if you are in the U.K. good luck ! Let us know how it transpires. I hope it turns out to be fine and there is another explanation. Once you reach an Endocrinologist, they take this very seriously indeed.

[Crochetgirl65_ in reply to SheffieldJane]

Thank you. I am never sure if I should take a ‘dig in and get on with it’ approach. Sounds like I need to go up a bit and try again.

[Gossiplady]

Hi Crochetgirl65! Well done in getting so low. You give us all great hope! Keep smiling.

[Crochetgirl65_ in reply to Gossiplady]

Thank you x