Numbness in feet anyone experienced this with long term prednisone

Hiya Kassie. I'm on Preds for GCA (Temporal Arteritis). I've just reduced to 40mg Preds was on 60 then 50 so far so goodish. I don't get numbness in my feet but a lot of cramp in my toes. I am putting it down to the Pred too. Could mention it to my Dr I suppose but would that mean another tab to take!! Preds seem to causea lot of probs but they are a ncessary evil aren't they. I take my medication with my breakfast. My sleep is disturbed too and that's yet another prob with Pred. I'm sure someone in this group will be able to help you more as there are some very knowledgeable people on here. Good luck. x

Thanks Mary J. Yep the Pred definitely is not nice but does give relief to us PMR sufferers. I have been very

impressed with the quality of the advice from others particularly Eileen and Mrs O. This site is invaluable.

There certainly appears to be much more research and resources available in the UK than Australia. Have a good day. KB

When you get these funny symptoms you really need to mention it to your doctor - believe me pred is blamed for an awful lot of things it is innocent of! So is PMR if it comes to that ;-)

A lady on another forum has had similar numbness for some time, dismissed by some doctors. She then developed restless legs syndrome which became increasingly severe. The rheumy dismissed it as muscle weakness due to pred and PMR. When she was eventually referred to a neurologist he identified it immediately as RLS and has prescribed appropriate medication - and the letter he sent her and her GP (and the rheumy I assume) mentioned the reason the rheumy gave as being totally wrong! Apparently the neuropathy she's noted for some time is often a precursor.

Mary - you are at a high dose still, it should improve with time. Just try to rest as much as you can otherwise and don't try to fight the lack of sleep as it tends to make it worse. If you can sleep in the daytime do so - many people find planning a fixed nap in the afternoon helps greatly.

The fact there are more resources in the UK is primarily due to the efforts of 5 ladies who "met" through this forum and got together, eventually setting up the UK PMR and GCA charity and the northeast support group was started and developed its web site for the benefit of all. All because when they became ill several years ago there was NOTHING except a lady in Scotland who has since received an award for her work. I'd put a link up but it will disappear until it's approved!

You might find it by googling "Jean Miller PMR-GCA Scotland wins an award"

Eileen

Thank you once again Eileen for your advice. Where would we all be without uou and this forum. You put so many minds to rest.I will mention my "funny symptoms" just in case. As you say my dose is still high. I wonder if after a month on 40mg will my Rheumy drop me another 10mg or will it depend on my bloods. He will have two lots of results to compare when I see him on the 21st of this month as I am having more done next week before I see him. I will post here what he says. Good luck to all my forum friends. x

KASSIE - I get quite severe numbness in my toes and, like you, it's more obvious at night. However, in my case this is down to a slipped vertebrae - I had it pre-PMR and still do. I doubt very much that what you're experiencing is down to either PMR or the steroids and, as Eileen suggests, it should be referred to your Dr. I did, however, suffer from severe twitching in my feet and toes for a period of time during my steroid treatment. It disappeared of its own accord as I reduced down through the doses so that I did put down to either the inflammation of PMR or the steroids.

MARY J - I was very lucky when finally diagnosed with PMR and GCA in that, guided by my blood test markers and my rheumatologist, I was able to reduce from the 40mg starting dose to 30mg after two weeks. One week later I was able to reduce a further 10mg to 20mgs and another week later down to 15mgs - at this stage the reductions were slowed, and both my ESR and CRP blood tests had returned to normal from ESR 46 and CRP 65 some four weeks earlier. A year earlier at the start of just PMR (undiagnosed at the time) my readings were ESR 92 and CRP 157!

The lack of sleep is not fun but rest assured it will improve as you get to the lower doses. Bet you're feeling like a pin cushion at the moment too! It sounds as though all is going quite smoothly for you though - keep it up, Mary J.

MrsO

Thank you MrsO. Yes I am coping pretty well so far. The only thing that does get to me a bit is frequent rapid heartbeat and feelings of fight or flight as they call it, but on the whole I'm ok and luckier than a lot of dufferers. So on we go :-) x