Tapering off Prednisone: Hi, again. I haven't... - PMRGCAuk

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Tapering off Prednisone

Robinre
Robinre

Hi, again. I haven't posted in quite a few months. I am now down to 1 mg Prednisone after having been diagnosed with PMR exactly 3 years ago (but suffered 2 years before diagnosis). My initial dose was 20 mg and tapered down to 1 mg. This I did 3 times with flares each time when I tried to stop at 1 mg.. My last flare was 6 months ago and I was put back on 5 mg and tapered down from there. Now at 1 mg with no unusual withdrawal symptoms; however, I am so cold all the time and stay chilled even with additional heat, covers, etc. I hate the usual fatique as well. Does anyone else experience unusual adversity to cold?

8 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Have you had a Synacthen Test to check your Adrenals are capable of working? The fatigue could be related - not sure about the cold though. How’s your blood pressure? Low can also be related to Adrenals not working properly.

Of course it could just be your PMR playing up, 3 years is not necessarily the end of things! Are you any better on an extra mg or two?

Robinre
Robinre in reply to DorsetLady

Thank you for the reply. Yes, my blood pressure has been dropping and it is back to normal before taking Prednisone. It was always 110/70 until Prednisone then went to about 128 or 130/80. Now off all Prednisone for one week, it is going down slowly to what it was before PMR (yesterday was 112/78. Did have the test for the adrenal gland once before after coming of Prednisone but not this time. I now seem not to be so cold but now have terrible burning pains in both thighs (fronts). During the day not so obvious but can't sleep at night. I am having SED rate test today and seeing the doctor soon. Hope it is not from another flair.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Robinre

I hope so too. Please keep us updated- and hope you soon get an answer.

PMRpro
PMRproAmbassador

It can be a reaction after withdrawal of steroids - it would probably be a good idea if your GP were to check your cortisol levels and perhaps request a synacthen test to see how well your adrenal glands are working.

Hi

I’m not good with the cold , my hands and feet struggle to warm up at the best of times saying that I don’t have much meat on my bones , I always say i’m not designed to live in the UK.

Robinre
Robinre in reply to Gaz227

And I live in "sunny" California but am cold all the time. Stay indoors with the heater up and another heater I take into each room in which I go. Will be seeing my doctor next week and will ask about a test to determine cortisol levels.

Before I was diagnosed and put on pred I felt the cold very strongly (and the UK is so damp). Wouldn't a top up in a warm, sunny climate be wonderful about now.

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