Polymyalgia

Sorry to hear this NanKate. I have no knowledge or experience but I'm sure someone who has will be along soon.

Have a very gentle ((hug)))

Sorry to hear this NanKate. A close friend of mine has Polymyalgia Rheumatica and I know she has gained a lot of useful information and support from a Face Book group. Even if you aren't on Face Book, maybe try doing a search and see what comes up. Good Luck and a few wobbles are allowed!

I am just coming out of this condition. It's odd, and the medics don't know why, but it often lasts only 2 years or so with steroid treatment.
Once you're on the steroids there will be an almost magical transformation - all your aches and pains will disappear very quickly. I was pain free within 48 hours. But you have to remember that steroids subdue all pain, not just that caused by the PMR, so when you eventually come off the steroids, or when you have reduced the dose dramatically. the normal arthritic pains will return.
You will also have to take calcium and vitamin D tablets daily because steroids increase your risk of osteoporosis. Ask for a bone density test to see the condition of your bones now. I had one at the beginning and another a few months ago and my BD has been fine throughout.
There are possible side effects from the steroids just as there are with all drugs. Make sure you read the info leaflet thoroughly. The worst side effects I've had are weight gain (but it doesn't take much with me - I do like my food!) and an increase in sweating, mainly through my head - while on higher dosages (8-15mg), I would suddenly and for no apparent reason feel sweat trickling down my face and neck. I grew my fringe out because it was frequently getting drenched . Since I got the dosage down to below 7mg this side effect has gone.
Please don't worry, you will probably be absolutely fine and it will be so wonderful to be pain free!

Appreciate the hug * Kitty*.

Megran I am on Facebook so will check it out.

Indinana what a helpful and positive email, thanks so much.

Oh I forgot to mention a related condition, Giant Cell Arteritis. Only a small percentage of PMR sufferers also get this, so don't be too alarmed. But you should be aware of the symptoms so that you can get to your GP quickly if you think this might be developing.
Here's a link to more info on this
Good luck

I have Giant Cell Arteritis, and am currently reducing my dose of Prednisolone ( steroid) I'm down from 60mg to 10mg, so hope to be rid of them by autumn. I found this book helpful;

Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide,
by Kate Gilbert

Thanks I will research that book Daddima*

NanKate I had PMR and the steroids worked like magic, within two days I was completely pain free and full movement was restored. Unfortunately for other medical reasons I had to be taken off the steroids and it then took two years for the PMR to go. No relapses since though.

Thanks GA at least there is light at the end of the tunnel. A number of people have mentioned 2 years for the illness. Glad you have had no relapses.

NanKate at its worst I was unable to lift my arms and climbing the stairs was like attempting Everest, but over time the symptoms lessened until one day I woke up and realised I'd beaten the beggar!!

A great outcome GA.

Now to my next question why do people put on weight who are on steroids?

It took me a long time to lose 3 stone and I have mostly kept it off. I dread becoming my old porky self again. Do the steroids increase appetite or does the weight go on and you can't do anything about it ?

In my case I had a perfect storm, steroids plus a thyroid problem, so I can't really answer your question. In the short time I was on steroids I did put on weight very quickly, but in all honesty I don't recall having an increase in appetite. It took me ages to get the weight off, so my advice would be to buy a smaller dinner plate and watch your weight from day one, also keep up whatever your exercise regime is. Some people who knew me did ask if I was on steroids because I developed a 'puffy' look to my face.

It's only in the last year, since going on a low carb-high fat diet that I've lost all of the weight and kept it off.

A friend was diagnosed with PMR and has been on steroids - her GP also prescribed joining a walking group (a couple of gentle miles a week), swimming and an exercise class. She has put on weight - however, for some reason she stopped going to WW when she was diagnosed which I wondered if she should have continued as she has put some weight on.

Is this on the increase or is it that GPs are more aware of the condition these days? I have heard of quite a number of cases (perhaps I should get tested myself, although my pains are more in my joints).

Thanks GA I too have an under active thyroid - a double whammy.

I agree with the small plate and and being vigilant from Day 1. I do walk and go to Keep Fit but until I get on the tablets and start to feel better I am just washed out, but I will start up my activity the moment I can.

I have been getting painful legs and neck and wondered about PMR, and, like you NanKate, my main fear is having to go onto steroids with the weight gain. I am visiting the GP today for results of US scan of shoulder injury, so thought I might mention my fears, although part of me wants to bury my head in the sand!
I hope you get sorted soon.

I've had PMR for almost five years but now I think it is on the way out and I have gradually reduced my steroid dose to 4mg - started on 20. My inflammatory markers were sky high and there was no doubt about the diagnosis but if there had been any doubt, the almost instantaneous response to steroids would have been enough.
I have had a lot of help and support from a web forum - healthunlocked.com/pmrgcauk - and from a book written by a former sufferer from the condition:
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide
by Kate Gilbert.

Hope this helps.

Thanks * Annodomini* I will definitely get the book as two Gransnetters have recommended it.

I can't wait to have the blood test a week on Monday and then a week later, hopefully, be started on the tablets.

I am a complete misery with it from about 3.00 am to noon, with aches and pains and the restricted ability to walk slowly. My left leg feels as if it is waited down. As the day progresses I improve.

The only tiny upside is that I am losing weight because I have no appetite. I am really hoping I don't put on too much weight with the steroids but I feel so desperate I would take anything that subdues the pain.

Sorry to be a misery I'm not much fun to be with.

I have oral thrush too - what a bl**dy mess.

NanKate, what a long wait you are having for the blood test! I hope you get some treatment soon.

I mentioned my bad neck and painful heavy legs to my GP this morning. She doesn't think it is PMR (wrong sort of pain ), but has put a blood test request on my record so that if it continues I can just go ahead and get one done. Fingers crossed it will clear up.

Poor you Shysal hope you get some positive results if you have a blood test. Yes a 13 day wait for a blood test is scandalous , but in the meantime I have booked an acupuncture session to keep me going. I respond well to needles.

Hope you neck and legs are sorted soon. Growing old is a minefield of aches, pains and illnesses. And you and I are mere spring chickens at 69.

6 years ago I had Giant Cell Arteritis and was prescribed steroid treatment 50mg daily for 6 months, it was then reduced gradually and took 2 years to come off it. I put on loads of weight, ate like a horse. My understanding is that it sort of switches off the 'I'm full' signal. I also got the puffy face/ankles and the fluid hump on the back. Friends who hadn't seen me for a few months were very shocked. Once off the steroids all came good although I never quite lost all of the weight.
Steroids are wonderful for relief, all my other aches and pains also melted away. In their place I got over eating, tremors, fog brain etc.

My Rheumatologist says I have classic fibromyalgia, he also referred to Polymyalgia presumeably because of the Giant Cell Arteritis. He also referred to 'my osteoporosis'.
The truth is I haven't a clue what I've got..... well apart from the GCA 6 years ago.
Aches and pains, yes, but no idea what the label is.

If you've been on prednisolone for so long, Coolgran, you should have had a Dexa scan, as pred sometimes causes or accelerates osteoporosis. NanKate, why is it taking so long for you to get a blood test? The morning after my GP had made the provisional diagnosis, he took a blood sample and sent it off right away. That same afternoon, he rang me with the result. Good old NHS - and a super GP.

My doctor was apologetic about the 13 day wait and then the usual week wait for the results. There is a notice up in our surgery that they are doing all they can to alleviate the problems but it finishes 'we are in crisis'.

I have had one tiny victory I think the receptionist realised I was in quite a bad way when I tried to get a doctor's appointment only to be told that all the doctors were booked for the next 2 weeks. She almost whispered that each day just after midnight they released a few appointments which I could access online ( heaven help anyone who doesn't access the internet). I duly went online at 6.00 am and got an appointment.

I don't live in an inner city where the waits could be even worse, I am in a leafy part of the Chilterns where I can't imagine they have trouble recruiting staff, that is if there are enough doctors to recruit.

I don't know what I would have done without all your help and advice, very grateful to you all.

Under active thyroid here too, as well as the GCA. I was hoping to reduce the steroids last visit ( from 7.5 to 5 ), but apparently the platelet count was up, so doc left it at 7.5, then called me to say markers were also up, so go back to 10 mg a day. Now the aches and pains have returned, so I'm hoping it's the GCA going out with a bang!
I take Alendronic Acid once a week to protect against osteoporosis.

Just a quick update.

I had my very delayed blood test Monday, the doctor phoned me Tuesday confirmed PMR issued prescription and I started steroids Wednesday. It is now Friday morning and I have had my first decent night's sleep in days. I am still aching and think it might take me a few days to feel the benefit.

I just want to thank you all most sincerely for your support. you have helped me through a really difficult time.

I have bought and started reading Kate Gilbert's book. I have taken the advice on diet, especially on reducing sugar and carbs to avoid type 2 diabetes, which my dad had, this was on another thread I started. I have seen my optician to keep a check on my eye pressures.

I would have known nothing about all the above preventative measures if it hadn't been for all you wonderful Gransnetters. I am so grateful.