Coming off pred: After 3 years on pred GCA, my... - PMRGCAuk

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Coming off pred

PenelopeVita-Finzi
PenelopeVita-Finzi

After 3 years on pred GCA, my blood tests are ‘perfect’ according to my consultant. I reduced the dose of pred to 4mg a day and am now halfway through the dead slow method taking it down to 3mg. My question is: should I continue despite some pain - not serious - or should I stop reducing? Should I stop at this halfway point and take 3 and 4 alternate days and, if/when the pain settles down, then continue to reduce? I wonder if any of you have successfully got off prednisolone completely and, if so, you have any tips?

As always, I am so grateful that tgis forum exists.

12 Replies
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Hi Penelope Vita-Finza, I think your instincts are correct to pause your reduction here. It is a tiny dose and may well make all the difference to your continuing comfort and have no ill effects. Your bloods are “ perfect” because your disease is being treated. I think you will know when it has lifted completely. Symptoms rule here.

Thank you very much for your helpful reply.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Penelope,

Nice to hear from you again, and doing well!

Your consultant may think your blood are perfect, but they should be if the Preds doing it’s job! Doesn’t mean GCA is completely gone....yet!

If you have pain, and you’re sure it’s not withdrawal pains, then I would say go back to 4mg every day for, say a couple of weeks , make sure everything settles down and then try again.

On your DSNS you could try dropping to 3.5mg rather than 3mg as well, that helps the body copes better. Do you have uncoated tablets - can be cut with pill cutter - any chemist only about a £1.

I know it sounds ever so slow, but no point in rushing at the last hurdle, at these levels the Pred is doing very little in the side effect line, but still might be doing quite a lot GCA-wise.

Took me 4 & half years to get from 80mg to zero, (plus I had it undiagnosed for 18 months prior) so no rush.

Been off the steroids now for 19months!

Any tips? DON’T RUSH! TAKE IT EASY, 😉

Hidden
Hidden in reply to DorsetLady

I did not know this DL!!!! >>>> "Took me 4 & half years to get from 80mg to zero, (plus I had it undiagnosed for 18 months prior)..."

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

Why would you?

Now you know why I try and stop you getting carried away with things! In the nicest possible way of course 😉

My t-shirt’s not only worn, it’s torn, and bloodied too. 👚 But I’m still here, wittering on, so that’s all that matters. 🗣

Hidden
Hidden in reply to DorsetLady

True.

I LOVE that you continually try to reign me in!!! I truly do. Thank you for that!

There seems to be a huge part of my essence that is still that impetuous teenager! I don't know why she never grew up?

Yes, I see you have been through the mill, and back! And by the way... YOU DO NOT witter!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

🌹mine didn’t either....but sometimes my ‘mum’ head comes on!🧐

PMRpro
PMRproAmbassador

Of course your blood results are perfect - you are on enough pred to manage the inflammation!! That isn't the same thing as the PMR/GCA having gone away!! It may have done - you will find out if you reduce slowly to zero without problems. OTOH - if you have pain, pause. Just stop where you are and see how it goes over the next month. If you are on not enough pred it will get worse. If it is your body protesting it would like the higher dose back - it will improve.

One month (or two or three) here or there is immaterial at this sort of dose. The tortoise won the race remember!

I am down to 3mgs of the preds,l am supposed to have reduced down to 2 by now but pain comes back when l try to reduce. I still have problems with my legs sometimes on the 3mgs,so am staying on that for the time being,l am not sure whether l will ever come off them completely.

HeronNS
HeronNS in reply to Grants148

Probably you will. I hope I do , too. But we both should be happy our dosage is now so low.

PMRpro
PMRproAmbassador in reply to Grants148

I'd be back at 4mg if that makes a significant difference - you were looking for the lowest dose that gives the same result as the starting dose. No sensible doctor would complain at you being at 4mg - it is WAY below the physiological dose your body makes in the form of cortisol anyway so is causing little or no damage:

medpagetoday.com/rheumatolo...

Thank you for your message,l am fortunate to have come down to a low dose,my doctor also said that it should not be a problem,although he wanted me to go down to 2mgs if l could.

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