Tapering off Prednisone

[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?

[DorsetLady PMRGCAuk 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 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 PMRGCAuk volunteer in reply to Robinre]

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

[PMRpro Ambassador]

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.

[Clementine15]

Hi

[Gaz227]

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 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.

[whitefishbay]

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.