Polymyalgia rheumatica

I was diagnosed with PMR in March. Initially the steroids worked 15mg a day. I reduced to 10mg for two weeks but when I got to 5 mg a day the pains came back. I contacted the doctor to ask what I should be doing with dosage on Tuesday but as yet no response. He did say that the pred was a trial to confirm the diagnosis so maybe now that is established I will get a proper regimen for the dosage. HealthUnlocked is a great resource by the way!

I was diagnosed with PMR in 2010, I was unable to dress myself or manage stairs without help and the steroids I was prescribed were like a magic bullet. Unfortunately because of other health problems I could only take them for a short time, but their effectiveness in alleviating my symptoms was confirmation of the diagnosis. Once the PMR cleared (about a year all told) it hasn’t reoccurred.

just take the steroids and feel better. once the inflammtion subsides they will reduce them...

I was diagnosed with PMR 5 years ago and initially prescribed 15 mg Prednisolone which alleviated the pain within hours after no pain killer would help. I have suffered no ill effects from the steroids although I do use a low carb diet which has kept my weight stable. I am presently on 3 mg and hoping to be free of steroids this year. Most are off medication by this time although for an unfortunate few the condition takes longer to clear.

Thank you Sweetpeasue I’m certainly hoping that will be my experience.

I was diagnosed with PMR about 6 yrs ago. The stiff, painful shoulders are so bad that it becomes a real struggle to get out of bed and to dress. GP asked me to lift arms over my head a nd I couldn't get them up to shoulder height.
NICE guidlines starting dose of 15mg Prednisone worked for me within a few dys amd the pain was practically gone. After tapering off gradually I was great and was free of pain needing no more medication after nearly a Yr.
I know everyone can be different and some luckier than others.
I was scared too but hoping my experience alleviates some anxiety. Good luck.

Foxie that’s how I am taking them, currently 15 mg of Prednisolone, and so far no problems with the stomach.
The pain does tend to kick in around 4.30am along with some stiffness but greatly improved, thank heavens.
It’s disheartening to be taking pills and having a condition when I was pill free and relatively well a month ago after having kicked other health problems into touch!

Thank you Suzie and lostmy specs, I was hoping that there would be a useful website for sufferers so I’ll be interested to view that. It seems it takes longer to sort out Polymyalgia than medics suggest.

‘SuzieHi”, so pleased to have endorsement of my recommendation of Health Unlocked website. My family appear to think I have recovered (I wish!) but unless you have experienced this condition it is very difficult to explain. Just keep soldiering on and hope it “goes” some day. After five and a half years I am now on 1mg Prednisolone daily and in the New Year planning a second attempt to get to 0.5mg, will be doing this very slowly as my first attempt was unsuccessful. Good luck “SuzieHi” with your PMR journey.

I also found Health unlocked to be a good source of info & help. Especially when I thought my friends and family has had enough of my PMR troubles!

I was diagnosed with PMR in June 2019 after 3.5months of severe pain across shoulders, and pelvic area. The best advice I can give is to get in touch with the Health Unlocked website where you will get really good help from volunteers who have experienced PMR or the related condition Giant Cell Arteritis. Everyone’s experience of PMR is unique to them but this helpline has been my lifeline. It is a life-changing autoimmune disease and Prednisolone is vital but side effects can all be managed or mitigated. There is a lot to learn about the condition but this helpline is your best source of information and help.

Hopefully you'll have been given instructions about how to take your tablets but if not, this might be helpful.
"Take prednisolone with breakfast so it does not upset your stomach. Taking prednisolone in the morning also means it's less likely to affect your sleep. If your prednisolone tablets are labelled as "enteric coated" or "gastro resistant", you can take these with or without food but make sure to swallow them whole".
A friend is taking a painkiller that can damage her stomach and was advised to take the Lanzaprozole on an empty stomach before the painkiller and to take the painkiller after she'd eaten breakfast. I hope you are painfree and can enjoy your Christmas.

Thank you for your heartening replies. It was a difficult decision for me to agree to take steroids as I was worried about the side effects, particularly on my stomach which I took PPI’s for for years.
It was the pain levels that decided me, yes, untouchable by paracetamol. I started them and the Lansaprozole this mornings so I’m hoping for a better night’s sleep as a start.
Shysal I hope your RA is being well controlled, my grandmother suffered so badly from that.

I was diagnosed in 2012 with PMR. Terrible pain in my shoulders which ordinary pain killers didn’t touch. Within 24 hrs of taking Steroids I was pain free. Such a relief! The high dose I started on made me hyper active- so Dr reduced within the first week to 20(mg?). Took that dose for a few weeks , then a very very slow reduction of dose was started. Times when I had to stay at a particular dose for a few weeks then had to resume the reduction. Took me 2.5yrs to be steroid free and the PMR has thankfully not returned.
Would I take again- yes, as the pain was so bad.
No long term affects for me .
I did initially put on half a stone. Looking back at photos can see my ‘Steroid face’ - although family couldn’t see it? (Went as according to me as soon as the Steroids reduced to a low level)
I did have bone scans along the way to check bond health- all fine.

I have been taking a low dose of Prednisalone for two weeks now to treat a flare up of polymyalgia which I last had about 5 years ago. It’s the only thing that will give me relief and it works very quickly. The GP was reluctant to prescribe it as I’m 76 and she said there was a danger of bone thinning. I’ve been on Calci D since the last bout but I said I was willing to take the risk anyway as the pain was so bad. I will have a review in January to see if I need more. I also take a low dose of Lansaprazole to protect my stomach from the steroid. I hope you get some relief.

Fil had this condition and it was miraculous how quickly they worked. He was in his 80s and lived into his mid 90s painfree and active.

I had PMR, but refused steroids because I was reluctant to take them. However, I later developed Rheumatoid Arthritis, another auto-immune disease. I asked my consultant whether I had caused it by allowing my body to be inflamed. She couldn't say either way, but given my time again I would take the steroids and enjoy the relief they give.
I hope you find a way forward that you are happy with.

My OH takes prednisolone when suffering a flare up of an autoimmune disease, ulcerative colitis, so not the same condition. He usually starts on a high dose then is asked to reduce it over time before stopping altogether as symptoms are relieved.
He has never suffered side effects but then again would have had to take it anyway to control the disease.
Have you asked your consultant/ GP about side effects?
if not would try to arrange a telephone appointment with whichever is easiest to reach and ask about side effects.
Just to put your mind at rest.
All the best 🌺🙏🏾