Update.

[Pjso]

I contacted this forum, for the first time, just over 4 months ago as I had reduced my steroids from 5mg to 2.5mg and I felt ill. I was concerned that my PMR had returned. I was given some very useful advice and I contacted my GP who is very supportive. My GP suggested that I had steroid withdrawal symptoms and that I should persevere with 2.5mg. My blood results showed no sign of inflammation. I was told that coming of daily steroids could cause side effects that felt like PMR for some people even at a low dose. So I kept going and it took around a month to feel better. I stayed on 2.5mg daily for 4 months. Just over week ago I saw the hospital consultant to check on my TA. My bloods were checked again and all the results were within normal limits. I have reduced my steroids to 2 mg daily for the next 3 months. Then I am to return for another review and if there is no sign of inflammation I will reduced to 1mg daily. However, since the latest reduction, my body aches and I feel stiff but this time I am not worried that the PMR is returning. Do not get me wrong as I know that it can at any time, but I do believe that what I am experiencing at the moment are steroid withdrawal symptoms.

[SnazzyD]

Since you say you feel ill rather than being in pain I suspect you are having trouble with getting your adrenal glands to work reliably again. This can take time and patience I’m afraid. Do have a look at this essential reading for those on low doses, from the FAQ’s.

healthunlocked.com/pmrgcauk...

[Pjso in reply to SnazzyD]

Thank you I will.

[PMRpro Ambassador]

"My blood results showed no sign of inflammation"

They can lag a long way behind any return of mild symptoms, especially if they don't last all day. There must be enough inflammation present for long enough to trigger the liver to produce the proteins that raise the markers. So do keep an open mind.

[Pjso in reply to PMRpro]

Thank you - I will

[DorsetLady PMRGCAuk volunteer]

… but I do believe that what I am experiencing at the moment are steroid withdrawal symptoms

Maybe, maybe not.. like SnazzyD I would say adrenals, which your slow tapering will help, but at such low levels your PMR may still be lurking so as PMRpro advises keep an open mind.

[Pjso in reply to DorsetLady]

Thank you - I do.

[northwesterner]

I experienced the same thing when I have tapered. I have been on a 6 month taper from 3mg to 1mg of prednisone and the first or second day after the taper I feel sluggish and have a head ache. My blood test all seem to be in normal ranges so that’s good. I have eliminated gluten and inflammatory foods and started taking Tumeric each day and that seems to help.

[Pjso in reply to northwesterner]

Thank you for your reply. I have changed my diet and started do this early on when I was diagnosed. However I will certainly try Turmeric and try removing gluten. Thank you for the suggestion.