Developed PMR after being mis diagnosed for about 2weeks(phone triage) back end of May this year. Eventually prescribed Prednisolone and put on the NICE recommended programme of 15mg for 3 weeks the 12.5 for 3 weeks etc. Now on 10 mgs for another week then nine.
Although the meds seem to be keeping most of the PMR at bay it is complicated in that I have spinal stenosis.Cervical and lumbar as well as degenerative scoliosis ,so I already have weakness and numbness in my legs/feet
However,prior to PMR I was still quite active, but the longer the PMR goes on the weaker are my legs,combined with the muzzy lightheadedness is becoming a real drag. Is it the steroids or the PMR? Any suggestions
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Suttonsea
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There is NOT a NICE "recommended programme" - these are information sheets written by medical writers to gather advice in the literature into one place and as a result they encompass the errors of the past and are not written in stone! It is one way of tapering and matches several outlines in the literature but all of them include the qualifier that it may need to be adjusted for the individual patient - but hardly any doctors seem to register that, If it doesn't suit you - be proactive and slow the reduction down as that is the usual problem.
It really is difficult to say which is causing your problem - it could be either, it could be both. How did you feel at the end of the 3 weeks at 15mg? Do you feel better or worse now?
Thanks for that. To answer your question, l am in negligible pain from either the PMR or my stenosis,however, my leg weakness and muzzy head /balance is significantly worse.
Thanks for that. I’m on Half Securon and ramipril for blood pressure, which is well controlled.
Negligible pain from stenosis or PMR, just weakness and woozy head. Starts about an hour after waking in morning. Thought about delaying pred till midday,although they recommended after eating breakfast.
The earlier you can take the Pred the better - gets to work on the inflammatory substance's which occur about 4am. If you wake up early you could take Pred with a spoonful of yogurt or small piece of cheese then nod off again for an hour or so..
There don’t seem to be any interactions with existing meds and Pred…but do you take them at same time?
Hello! Muzzy head from Pred is definitely a thing! Hopefully you’ll notice an improvement as you slowly reduce to a lower dose that still keeps PMR in check.
Thanks for being on the forum. A wonderful place to learn and be supported/supportive!
Thanks, hope it will improve with a gradual reduction. I was grateful for steroids initially but I now have to quell my impatience to come off. C’est la vie!
Hi I too get a muzzy head with Pred I started on 15mg in March and have reduced to 9mg the muzzy head is lessening but is still there terms of my own tapering I have thus far followed GP guidelines but am staying on the dosage for 8 weeks to be a bit more sure it an OK dose
there are some similarities in my experience. I was diagnosed with “atypical “ PMR and started on 10 mg Prednisolone, told to reduce by 1 mg every month. Nobody on this site can understand why such a low dose to start, probably because they weren’t sure about the diagnosis (I had a long history of osteoarthritis starting in my forties, plu had recently finished treatment for breast cancer). Anyway, initially it helped quite a bit with the neck and shoulder pain, but that worsened once I followed their orders and started reducing. There on, I seesawed back and forth, as told, but never took more than 10 mg. That was getting on for two years ago. I’ve since decided/realised they really didn’t know if I had PMR or not, so have done my own reducing programme, now down to 1 mg. As soon as I go to zero, alternating days with 1, the pain gets noticeably worse, so I’m sticking to 1 for now. I suppose my point is that I’ve learned not particularly to trust the opinion or guidance of the professionals in an exhausted and understaffed NHS rheumatology department and have learned far more from looking at this source of information from people who have done a lot of research and are motivated by their own experiences. As there seems to be no definitive test for diagnosis, unfortunately, I suppose ultimately it isusually a matter of guesswork!
As soon as I go to zero, alternating days with 1, the pain gets noticeably worse, so I’m sticking to 1 for now.
When/if you do decide to try to go lower -maybe 1/2mg rather than zero -provided you have uncoated pills -and use a slower tapering plan as often suggested by use rather that the alternate days regime. That’s much harder on body -no wonder your PMR complained…
So 1mg to 0.5mg -then 0.5mg to zero. Many will tell you, 0.5mg does make a big difference!
Having listened to you all for over a year, I am actually down to 0.25 for a couple of weeks! Then a week of alternate days - 0.25, 0. I never felt that Pred gave me total relief, even at 20 and 15mg. Now have some aches and pains inc carpal tunnel. So not sure where I am at. Occasional meloxicam helps. Sacked a Rheumie at Christmas, seeing a new one in Sept.
Even my GP has taken note of the great advice I have gathered here and passed it to other patients.
If you've never had relief even on 20mg, then maybe you haven’t had the PMR we talk about on here… or it’s never been properly controlled… and to be down to almost zero with a year may indicate that.
From some of your previous replies, doesn’t sound as if your GP knew much about PMR initially- hope they do now.. 😊
It's going to be a little bit of everything .Your body needs to adjust to the steroids and they cause various side effects in the early days especially at doses over 10 mg.
Your body needs to adjust too , it will take some time for the inflammation to be properly controlled after starting the medication and it will take a little longer for you because you've also got the chance of inflammatory pain from your other back problems bumping heads with the PMR even if it was under good control prior to that.
Unfortunately all of your conditions act like spoilt brats throwing tantrums to get the most attention at times.
You will also be more sensitive to pain flares if you do too much even if you are taking things easier than you do for your other issues, be aware of that . Pace your activity very slowly with plenty of rests , don't push it when you feel good to make up for rest days or you'll just poke the bear again.
Keep your activity to little and often to help to reduce stiffness and reduce that feeling if woozy fatigue. Just a few minutes stroll once an hour , even indoors , and a gentler version of any stretches or chair exercises that suits your other back problems. It will keep you going and reduce the numb feeling without causing a problem.
And don't forget if your daily activity is more active you will require more rests within tasks and that's classed as exercise , delegate housework when you can.
Keep posing with any questions you have , or just to have a rant if you need one , it's hard going at first so we'll all be here to help you when you need us , take care , Bee
Thanks for that, wise words very well put. I can see now that I have been pushing the “old body” a bit too hard. Have noted your advice and will take steps ensure more rest periods.
Dear Suttonsea are you taking Omeprazole or something else to line your stomach to protect it from the Pred? I find it dampens down some of the bad feeling of Pred. I didn't get the weakness in the legs but did get the muzzy head which I found very distressing. I have nightmarish memories of a journey I made to Stratford East London for a medical test when I was on about 10mg. At times I found that walking used up some of the horrible buzzy energy. I got a different kind of muzzy head from low adrenalin when reducing around 7mg. I don't know if any of that chimes with your experience.
Not taking anything yet for stomach. Take Pred dissolved in water straight after breakfast. So far so good? I agree sometimes working through the “head maze” gardening or walking can reduce it.
My experience was that the horrible 'head maze' feeling reduced with each reduction in Pred. I am now on 5mg and it has almost gone. I hope it will be the same for you. Do take extra care while you are not quite yourself.
Thanks. Pleased that you are getting relief now you are on 5mg. I reduce to 9 this week. A way to go before I reach 5! I guess this is where our patience gene is required?
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