After 8.5 years on Prednisolone, I ceased all medication in August 2021 having used the DSNS programme. My blood test results were normal and I was signed off by the rheumatologist in November 2021. At that time, I told her that I still experience some stiffness in my thighs and glutes, but she said this was “residual” and would probably improve in time.
Four months later, there’s no significant improvement and I’m wondering if this is normal. I’d appreciate your views and advice, please.
The general opinion is that it can take up to a year after finishing pred altogether to get back to "normal" - but you also have to remember you are a lot older than you were when you went on pred AND pred is said to increase the effects of aging. There must have been a degree of loss of condition due to PMR/pred/aging. Your adrenal function is also still settling down - it can have similar effects to what you describe when not at the top of its game.
I think if the PMR were not in remission your symptoms would be increasing rather than remaining stable. and to have got off pred after over 8 years is pretty impressive!
Thank you, PMRpro; that’s very reassuring.
Four months? I wouldn’t over think it. Who knows what happens to the body with all that Pred, valuable though it is. Who knows what PMR actually is? Who knows what ageing has been accelerated or is just normal? We want certainty and a plan but the end is anything but. If it isn’t getting worse, I’d just keep doing everything you can to look after yourself and let the body get used to not having Pred at the helm and finding it’s new level.
Were you ever without this level of pain or discomfort? It sounds very similar to my initial PMR symptoms (at that time undiagnosed), which I put down to being out of condition and spent some months trying to get into better condition. It took a long time, about a year, but it did get a lot worse and eventually I got a diagnosis and treatment. I know some people get fullblown PMR virtually overnight but this was not my experience. Long way of saying, be careful. Hopefully it is just some sort of after-effect. Treat yourself kindly. Good luck! 🍀
My PMR started with a stiff neck and progressed rapidly. I am quite fit, due to regular swimming for 27 years, so it was a shock to be diagnosed with PMR at 56.Thank you for your help.
I know exactly what you mean. I felt I was quite fit too, which is why I kept trying to get rid of the stiffness by exercising more!
I was on Prednisone for 1.5 years. Obsessively tapering, going down weekly, then bouncing back up. I got off all Pred this January 7th. Then my hands got really painful and my rheumatologist added Hydroxychloroquine to the Methotrexate I was already taking for my hands. I thought I was turning a corner. I wasn't, even though my CRP tests are in the <1.5 range each morning the stiffness, in my hands, shoulders, thighs remains. Along with heaviness in my legs. I picked up the term "Lead Legs" on this site which I now use. Reading the response to you from PMRpro gives me hope, that it will take time for me to "return to normal". One thing I do now is monitor my diet. I found that sugar absolutely destroys me. When I don't avoid it, my pain, stiffness, fatigue increases greatly. On your bad days, think about what you ate the day before. I researched the AIP diet, (Autoimmune Protocol Diet). I am on a very strict and rigid lifestyle eating plan (not a diet) because I simply wanted to reduce the pain, and other effects. I find the phycological battle to stay positive is almost harder than the disorder itself. It gives me great comfort to know I'm not going thru this alone. This site has been a god-send to me. Just like HeronNS said to you earlier, "Treat yourself kindly, Good Luck!". I would add to that "Stay Positive, no matter what".
Thank you for that. I’m careful about monitoring my weight, but hadn’t considered monitoring what I eat, so I’ll take a look at the AIP diet.Like you, I find the information and help on this site invaluable.
Has anything else been considered for hips/glutes? Osteoarthrits for example.But as stated, you are 8 years older, (sorry!) and PMR & Pred may well have made your muscles a lot weaker than you realise. Perhaps some gentle (and I do mean gentle) exercise/strengthening is required - plent of you tube videos, but do go for "older" or "for seniors" - or even "sitting" exercises...and start very slowly...
As the pains aren't increasing, would question it's a return of PMR...
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