Been on steroids for 5 years
And finally off them about a month ago due to my blood results showing no inflammation but since then my mobility has deteriorated to a shuffle is the best I can describe it with a lot of muscle pain also my feet have swollen and generally I feel tired and unwell is this normal and should I just bear with it
My bloods have never shown any inflamation, but without the pred I doubt I would be able to get out of bed.
What dose were you taking? I don't think it's a good idea to just stop taking pred.
The more knowlegable amungst us will be along and give you good advice.
Is it possible to go back onto a small dose of pred? Can you talk to your doctor about it?
Just because your blood levels were OK did not mean the PMR had gone away - it meant you were on enough pred to keep them low. Even 1mg may be enough to keep you stable - even if some doctors think it is too little to be doing anything. If there is any left-over inflammation it will build up day by day until it reaches a level that is high enough to spill over and cause symptoms. The result is a return of symptoms.
I see. Thank you, PMRPro. That may well apply for me. Went from 1 1/2 years of 1mg to "no" medrol - 6+ months.
Yes, I may be where you have described. Just started physical therapy + PMR really bad now.
Being treated for debilitating back spasms. - physical therapy --
Walking can be difficult -- but I am continuing.
Very good explanation, understood. Thank you. All my best, Whittelsey
Hello, what a disappointment. Over what time did you come off your last dose level of Pred? If you’re one of those whose inflammatory markers show up, good bloods while on Pred isn’t a sign that PMR is gone, it’s just that the Pred is doing its job at that level. It is also possible that another autoimmune condition has come in to roost. No, I wouldn’t bear with it, go and report this to a medic.
Oh dear! No! The blood tests are not a true indication. The disease doesn’t seem finished with you yet. Please go back to the dose you were last comfortable at. PMR lasts, on average 5.9 years. That is an average. Don’t suffer unnecessarily.
I only had one High blood level and that was at the very beginning 2 years ago. Ever since it has been at a low normal. Good Luck, Feel Better
Worth a chat with your doctor, I should think. V
When I tapered off steroids 20 months ago, I experienced a significant amount of pain in my knees, feet and hands -- something that was not typical of the PMR pains I formerly had. I worried it was perhaps the start of a flare, but my doctor thought it was likely steroid withdrawal pain and my blood tests showed very low inflammatory factors. The advice the doctor gave me has served me well: "Take acetaminophen for the pains and if it is steroid withdrawal that will help it subside. If it is a flare, the acetaminophen will not help and we may need to return to a low dose of steroid."
wife of Long term PMR sufferer 
Long Term Use of Prednisolone
Coming of steroids with pmr
Long term PMR
Long term PMR
