Tapering issues

[Jackie_boy]

I’m learning a lot from reading the many posts here, especially interested in the various effects of tapering steroids. I’m currently on a slow path from 15mg prescribed for PMR at the start of this year, now just about at 6.5mg. My question is about sensations experienced on waking in the early hours, usually around 3 am when I often have a variety of sensations, including a strong discomfort (not pain) in my feet and sometimes hands. It’s a burning and tingling feeling and usually disappears by the morning. Does anyone else have similar?

[SheffieldJane]

This can be a sign of peripheral neuropathy - nerve damage. It can be soothed by having your feet in cool water 15 minutes before bed, simple base cream like E45 and over the counter analgesics can be helpful. Most treatment focuses on preventing further nerve damage. Have you been tested for diabetes? We can get steroid induced diabetes and the correct diet will help.

[Jackie_boy in reply to SheffieldJane]

Thank you for the observation especially on diabetes. Only last week I had a conversation with the haematology consultant I see for a blood disorder and we discussed the effects of long term steroids. He’s now put a request for a search on pre diabetes onto my regular blood test so that will be interesting. Meanwhile I’m looking at diet too - as a vegetarian it needs some care I suppose.

[SheffieldJane in reply to Jackie_boy]

There is plenty of guidance on-line and recipes if it turns out that you need a particular diet that incorporates vegetarianism, low carbs and low sugar. Good luck with your test results. My son is gluten intolerant, so we have to incorporate that too. Fortunately for us, my OH is a very imaginative cook.

[PMRpro Ambassador]

Many people feel the effect of the new batch of inflammatory substances being shed in the body at 4am-ish. 3am is early for that but it does vary a bit.

[Heron82]

Yes I get this and have mentioned it to my rheumy but he dismissed it. Also heavy aching legs always starts ca. 3 - 4am.