I am currently on 1mg of pred although I have had pain in my neck for a while but it is not to bad but I have started to get pain at the top of my left leg at the back, when I fist started with polymyalgia I had pain in my neck and the back of both legs I could hardly walk this is only at the back of one leg. Could it be a flare ? I’m not sure what to do I no longer see my GP he referred me to the hospital during lockdown and the hospital doctor is only really interested in my osteoporosis so I see her yearly. I feel that I have no support. Thank you
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Sandidee
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Worth a try in the lack of any medical advice… and if it doesn’t work then it’s probably not your PMR - so you will need to think outside the box, and so will your GP.
Thank you Dorset lady that is a really useful read. I have been steadily reducing my dose by 1 mg every two months, because every month was too quick for me. I recently reduced to my lowest dose of 2 mg but started getting symptoms of a flare. This has happened to me before, while I have been reducing, but the symptoms passed after a week or so, and I was able to continue reducing. I’d also gone and checked my blood for any inflammation, and it was in normal range. Now I’ve got down to 2 mg, I noticed after a few days that I was getting the pains in my mid back and finding it difficult to breathe in deeply, which was one of my pre-diagnosis symptoms, I also felt a mild headache, that just lingered on and off. I took Co-Codamol and it dulled the pain and enabled me to sleep, but didn’t remove it. I have since increased my dose to 5 mg over the past four days and the pain is subsiding.
I plan to wait for a callback from the rheumatology nurse for further advice next week.
Remember - and remind her - that youa re not heading straight for zero but titrating the dose to find the lowest effective dose. When your body rebels at a similar dose more than once it is telling you that you have arrived. For now at least - you will get lower, just not yet.
You may have had "normal" inflammatory markers, but they often lag behind symptoms - which are the key - sometimes the medics place too much credence on markers.
As PMRpro has advised.. if you're struggling at similar dose - that is telling you that it's your limit for the time being - won't always be , but is now.. and at such low doses, even 0.5mg really does make a big difference.
If dealing with a flare approach doesn’t work I would consider trying to see someone versed in musculoskeletal issues to see if you have got some postural gremlins. You can als do some detective work yourself. At the end of my Pred journey I was in a bit of a state with neck and shoulder issues and low back and abdominal weakness which then hurt my knees and hips. It was made worse if I tried to do something active like sweeping the path or tidying the shed which just things worse. Even picking up a bag of shopping, “twang!”.
It took me 3 years from stopping Pred to be able to do anything even vaguely heavy duty. I also had to change my pillow because it was fanning the flames and I had to watch my sitting posture. It wasn’t that I was slouching, it was because I have always sat bolt upright and prefer a hard chair. This caused shortening of some muscles, pressure on my sit bones and my hip got fed up with me get up on the same side, twisting the same each time. My body now hates repetition and habits and I have to work on stability muscles all over and flexibility.
It does sound as if it is possible that the 1mg is just a little bit too low - 1/2mg can make a big difference as to how you feel. Try the the flare approach and see if it helps.
You may need a few days of a higher dose first to clear the inflammation out - but you may be soon enough not to need that. But don't be in denial if it does increase - or you may well end up where you started.
In the past I have always gone up to 10 mg for a few days but no more then 6 days and then drop down to a lower dose, so I might have to do that then I’ll try 1and 1/2 mg . It’s my neck but its only one leg that’s affected not both of them and my leg doesn’t hurt all of the time.
I have never stopped completely I have got down to 1 mg but I have pain so have taken your advice and gone up, so fingers crossed I can get back on track.
“In the past I have always gone up to 10 mg for a few days” It sounds like you’ve tried to rush your tapering if you’ve had several flares and you have probably done so again. On such a low dose of pred I would think going up to 5 mg for a few days will get rid of the built up inflammation then back to 1.5 mg and stay there for at least 4 weeks before SLOWLY tapering to 1 mg.
Once I reached 10 mg I went dead slow with tapering I go down every two months by 1/2 mg as advised by my consultant at the hospital. Unfortunately I don’t see anyone at the moment for support.
I will also add that many patients are left on 2-3mg permanently to prevent future flares. So you might consider staying at 1.5 longer term (after your few days at mg).
Like you I wish I had listened more closely to my body I had just dropped from 8 to 7.5mg prednisone like you I had pain in the back of my legs and one shoulder nothing horrible just a “twinge” but I was enjoying a good couple weeks and thought I got this but two mornings later I needed help from bed I couldn’t dress myself it turned into a full blown flare that was in July I still am not back to where I was a jump up in prednisone is a great idea IMO
I am sorry to hear that you have had a tough time as well I have now gone up with my Pred so we will see what happens. Good luck to you I hope that you manage to get back on track.
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