prednisolone reduction: been on a low dose of 4mgs... - PMRGCAuk

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prednisolone reduction

gw3pwh profile image
13 Replies

been on a low dose of 4mgs for several years and felt ok . recently went to see a new docter about another illness and he said you must get of prednisolone as it is no good for you.! go down to 3mgs straight away .slowly over the next two weeks extreme fatigue ocured and the docter would not believe it was due to the reduction!. will someone let me know if i should go on a higher dose than 4mgs???

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gw3pwh
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13 Replies

Hi gw3pwh, new Dr's!!!?? I certainly would NOT reduce anymore. It could be steroid withdrawal or adrenals but the point us you were dkun OK with 4mg?? In that case I would go to 4mg for a moment... I. E. Until you can see a Dr you trust. And ease print this off for yourself and the surgery. If you do decide to taper then the dsns method tapering by 0.5mg or even 0.25mg may be appropriate. But at the moment I would go back to 4mg.

medscape.com/viewarticle/86...

in reply to

Please see edited version. NOT reduce..... Autocorrect 😳

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Why have you been at 4mg for so long?

Are you on 3mg or lower?

Dr needs to be aware you cannot suddenly reduce Pred that quickly if you’ve been on it that long!

I would think if you go back to 4mg you will probably be okay, but then reduce at 0.5mg per month. If 4mg doesn’t work then try an extra mg,

If your only symptom is fatigue then I would say Adrenals are still struggling - and that’s not surprising - so you need to give them a chance to wake up again.

You should ask for ACTH Test to see if they are actually capable of working.

gw3pwh profile image
gw3pwh in reply toDorsetLady

thanks for info . i stayed at 4mgs because docters said as it was that low . also a friend i know had been seen in harly street london by top PMR specialist that for lots of people there was no cure . and you must stay on a low maint dose?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply togw3pwh

No there is no cure, but PMR and GCA are self limiting - that is they usually burn out of their on accord over a number of years. There is no given time - but anything between 2-6 years, except on occasions when PMR in particular seem to last longer.

The aim is to find the lowest dose that controls the symptoms until the disease goes into remission.

If you have no other symptoms then maybe your illness is getting to that state. But having been on Pred for such a long time - you have to reduce really slowly for 2 reasons -

1) to make sure that if the illness is still there it doesn’t flare up because you aren’t taking enough medication,

2) to allow your Adrenals to start working again - any dose above 7-8mg they don’t. That’s about the level our own bodies would make in cortisol daily, so if you are taking more Pred your body doesn’t need to. Once you get below that level of Pred, your body needs to start producing cortisol again - only a little to start with - but more and more as you reduce the medication.

Yours are working a bit to add to the 4mg of Pred, but perhaps at 3mg they aren’t producing enough which is why you feel fatigued.

Does that make sense?

You need to go back to surgery and explain the issues - and certainly don’t reduce any more until everybody has had a rethink!

Good luck and please keep us informed.

. .

SnazzyD profile image
SnazzyD

Hmm, I’d want the doc to explain to me what the medical reasons are that are related to your new condition that makes it so bad to be on Pred at such a low dose. Also, I’d want to know exactly what the reason is for reducing at speed that risks adrenal crisis and why a fast reduction is being entertained without any sort of adrenal test first. It’s all basic physiology and pharmacology that a doctor should be aware of. 1mg may not seem much, but I know from experience it makes a huge difference if one’s adrenal system is not working properly.

gw3pwh profile image
gw3pwh in reply toSnazzyD

the doc i saw was clueless and i felt he could not care less as i am 80 yrs old!!!

PMRpro profile image
PMRproAmbassador in reply togw3pwh

Even more reason for you to stick with 4mg pred! What a prat ...

jinasc profile image
jinasc

Stop and go back to where you were................tell that GP, you want a Synacthen Test before you do any reducing and I really, really, mean that.

PMRpro profile image
PMRproAmbassador

Find another doctor - asap. His physiology knowledge is seriously lacking - this is a physiological dose which has few adverse effects and now the limiting factor is possibly less the PMR ,though that may still be active, but the return of adrenal function. In a taper like this aiming to get the adrenal function to return no dose reductions should be more than 10% of the current dose to minimise the effect on the body. He told you to reduce by 25% - no wonder you feel fatigued.

Before you reduce at all you need a synacthen test to be sure your adrenal glands CAN produce cortisol, that isn't a given, Once you know that you can reduce - but SLOWLY.

And the others have said the rest I would have said.

gw3pwh profile image
gw3pwh in reply toPMRpro

thank i will now ask for this test. in the mean time i am taking vitamin b+and ashwagandha to help my immune system

in reply togw3pwh

Please be careful what you mix, ashwagandha side effect is reducing cortisol. You are wanting your body to start producing more of it own. I would also be reluctant until, remission confirmed, to support my currently overactive immune system. Sadly until you are off pred and pmr does not immediately come back, you don't really know what's going on with it.

gw3pwh profile image
gw3pwh

thanks i did no know that

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