Tapering Prednisolone

[BinnieBoo]

Hi there... I was tapering 1mg every month until recently when I changed to half a mg every two weeks. I am now down to 5mg and feel unwell. My ESR is 6 but I have achy hips and back etc..I'm very tired, feel nauseous most of the day and also anxious. I could explain away the aches and pains as I suffered those for years on and off before my poly diagnosis but the others are a bit mystifying. I'm thinking adrenals. However this a first for me.

[piglette]

Perhaps at 10mg you should have changed to 0.5mg every four weeks. Reducing every two weeks is probably too short a period to know if the reduction is OK.

[PMRpro Ambassador]

I'm thinking adrenals too for the nausea etc but are the aches PMR-like? You can have muscle and joint pain with adrenal insufficiency too.

However - you are not reducing relentlessly to zero come what may. You are looking for the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did. You do that by tapering SLOWLY until you get to a dose that just allows PMR symptoms to reappear and then you go back to the last dose where you were really good.

The lower you get, the slower you should go so I agree with piglette when she says 1/2mg per 4 weeks would be better. But I think you need to at least stick where you are for a while and see if your problems settle - or, in the case of PMR, get worse. And this time of year isn't a good time to taper - all the stress of Christmas makes it harder, stress is stress even if you think it is good, and some rheumies actually tell their patients not to taper in winter!

[DorsetLady PMRGCAuk volunteer]

Have a look at this re adrenals-

healthunlocked.com/pmrgcauk...

And would say you may also be a bit low on Pred for PMR… so have a break from tapering and let things settle- that will help PMR and adrenals.. add in Christmas and winter as PMRpro has said, and it all becomes too much for body to cope with.

[PMRnewbie2017]

Erm, have i misunderstood but 1mg per month is the same as 0.5mg every 2 weeks??. Are you using our slow taper regimes?Sounds like secondary adrenal insufficiency to me too. You need to slow significantly. I have had episodes of 2ndry AI over past 7yrs and because of my professional knowledge and help from this forum was able to avert a crisis. The lower you go, the slower you go.

[ChrisBeeLoop]

I taper in ¼ Mrs and have really slowed it down since getting to 5 ½ mg. I have days of heavy fatigue and aches on waking so I am taking at least a month over each reduction. currently on 4 ½ til after Christmas, which will be about five weeks on that dose but yesterday I felt like a spring lamb and today has started well so fingers crossed. My CRP results have been consistently low throughout the aches and pains of tapering and I really think it is an adrenal insufficiency which makes me tired. It took some time but I have changed my mindset and will go slowly and listen to the feedback from my body. My mantra is now PMRPro's Lowest Effective Dose. I keep telling myself diet is the key but is is hard to stay away from those carbs, even for someone like me who doesn’t have a deep rooted love of bread, potatoes and cakes.

[BinnieBoo in reply to ChrisBeeLoop]

Thank you for responding. It's such a strange thing to manage isn't it. Sometimes I'm whizzing around the house playing 'catchup' and getting done the jobs I have neglected and then by the afternoon I'm slumped in a heap on the sofa wishing I'd just taken things a little slower. Such is the journey.....

[PMRpro Ambassador in reply to BinnieBoo]

But that is where you go wrong - PACING is the key to living well with PMR/GCA and pred. That's why it is one of the links in the welcome post DL sends everyone when they arrive. Have you had it?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not sure -but I’ll send it again  BinnieBoo

healthunlocked.com/pmrgcauk...

[BinnieBoo]

Thanks everyone for all the info. After reading all your replies I can see where I've gone wrong. I have relentlessly tried to get to the 'finishing' line as I've been so fed up with the side effects I've experienced and quite frankly nervous of ones which may possibly be waiting round the corner for me. In the first year of my journey I took it much slower, but this last year I've ramped it up somewhat, mainly because the Alendronic Acid really didn't agree with me back in January (sickness and stomach cramps) and I was having episodes of very high BP readings, irregular heart beats and palpatations. My doctor took me off the A.A. as I had been on it for a year and as he said at the time "I would have had enough to see me through". At times I have felt so alone as I am managing this on my own. Saying that, Health unlocked has been really helpful. The link from Dorset Lady had a great deal of information, facts that I was unaware of. Many of you talk about your rheumatologist. Well I haven't managed to see one yet and trying to keep the continuity and see my GP who first diagnosed 'Poly' is virtually impossible. I was fobbed off with Doctor 'Chocolate Fire Guard' recently who having read my notes wanted me to come off Prednisolone ASAP. ....Hello I've got Polymyalgia I'm tapering !!! Anyway, I have upped my dose from 5mg to 6mg from yesterday and today I feel so much better. I'm going to stay put and see what happens but just in 48 hours I can feel the difference. Thank you once again (🙂This is me smiling)

[PMRpro Ambassador in reply to BinnieBoo]

If you are struggling with pred effects, do ask about them on a new thread and someone will have suggestions to make them less bad,

Were the raised BP and arrythmia problems investigated properly and diagnosed - and managed?

[BinnieBoo in reply to PMRpro]

Yes I'll do that.... Yep my heart has checked out and I am taking Amlodipine for my BP. I have had palpitations and irregular heart beat in the past, usually at times of stress and such and just lately which has improved since I raised my Pred. dose.

[PMRpro Ambassador in reply to BinnieBoo]

I had that experience - my atrial fibrillation was due to PMR and always got worse if I had a flare. My relatively high dose of pred was to help control it. Are you on an anticoagulant? Most important with some arrythmias.

[BinnieBoo in reply to PMRpro]

No I'm not on an anticoagulant. I do find relaxation breathing techniques are quite effective though, but as I said in my earlier posts the episodes have got less in just a couple of days since I upped the steroids.

[DorsetLady PMRGCAuk volunteer in reply to BinnieBoo]

Glad to see you smiling… and to be honest even with GCA I hardly ever saw a Rheumy [had been diagnosed by ophthalmologist after sight loss, and stayed under them for first few months]. The ophthalmologist did say I should be under care of Rheumy but it took another few months to see one, and he wasn’t very interested. So I stuck with my GP from there on.. and it worked for me. Although I have to say once diagnosed and on Pred I had very little issues whatsoever. Mainly I think because my taper was very slow [ultra cautious GP who had completely missed GCA] - and fortunately no side effects from Pred nor AA.

But this was all pre Covid, which has made everything much more difficult for the NHS as a whole.

[BinnieBoo in reply to DorsetLady]

Thank you Dorset Lady. I felt tragic 3 days ago, but I'm feeling a bit more optimistic now I've got something to work with. Onwards and upwards as they say.

[BinnieBoo in reply to BinnieBoo]

Thanks for the DL...I found it most helpful....