Polymyalgia

Sorry to read this, I have not had it myself but MIL had it and now SIL has it. SIL on Steroids and everytime she tries to reduce dose she is bad again. It is a very difficult condition to manage, hope you feel better soon.

I have the condition. Fortunately I think it is quite mild, so I have chosen not to take medication. I just didn't want those horrible steroids in my body! I get by on a dose of paracetamol at night and one of Ibuprofen during the morning. In fact I haven't even taken those so far this week. I think I had the PMR for some time before being diagnosed which makes it about a year so far. I hope that in another year or so I shall have got over it.
I realize that for some the symptoms are so awful that there is no choice but to be treated. I hope you will improve soon.

Meriel so sorry to hear that you have this painful condition. It is important to take the steroids as, if untreated, it can lead to unpleasant and life threatening complications. It can be difficult to find the right balance of medication so just hope that it is soon under control for you.

DH has had this for a very long time and has often managed to reduce the steroids but when he has entirely stopped taking them it is not long before he is forced to start taking them again. I can usually tell when he is having a flare up as apart from the pain and difficulty sleeping, he becomes very clumsy and breaks things, is easily unbalanced and becomes quite grumpy.
It is supposed to burn itself out as it is a rheumatic condition and I actually wonder if he has had it so long just because he is reducing the steroids too much and does this as soon as he can bear it. Stiff upper lip, grin and bear it is not often the wisest course but he is stubborn!

I too have this horrid illness.

I just take a mixture of steroids and painkillers, plus walking everyday to keep things moving.

I am down to 8 mg a day but can't get any lower at present.

I wondered about using a Tens Machine on my aching shoulder blade.

Sorry not to be any more helpful.

Meriel, I'm fortunate in not having this horrible condition but I do have similar health stuff. It may be useful to search gransnet as there have been earlier discussions. Best of luck.

Thanks for all your replies. Seems like I'll have to continue with the steroids for a while yet. As Synonymous said, I did get the dose right down but when I stopped taking them altogether it came back with a vengence and I had to start again with a high dose.
Nankate, I do take paracetamol when necessary but can't take ibruprofen as I take pills for high blood pressure!

My husband has this condition and takes steroids. Has had it now for almost six years. His father also suffers although they say that it's not hereditary. Husband once got down to three milligrams but had to go up again. Usually eight or ten keeps it under control.
He is often grumpy/bad tempered, it's hard for 'the other half' with this illness too as you are usually the one in the firing line.
Earlier this year the doctor put him back to twenty milligrams to try and clear it, unfortunately it didn't work. He doesn't like being asked about it or what level he's on so don't know how far down he's come.
Would be good to hear of any other treatments etc that other people have tried or had success with.

I've had PMR for over 5 years now and am on the way down (by slow reduction method) to 2mg. If I have a flare now I shall be distraught. I've managed to lose most of the weight I gained and would hate to put it back on again.
There's a great forum for and by people who have or have had it: www.healthunlocked.com/pmrgcauk; and a book available from Amazon by Kate Gilbert who has also had this affliction:
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I have found both the forum and Kate's book very helpful.

Apparently I got the web address wrong. Try this one which does seem to work.
healthunlocked.com/pmrgcauk

I have had this horrid illness for about 8 months. I have come down from 15 mg to 7 and a half mg but I suspect getting off them completely will take months if not years. However, I could think of worse illnesses to have.

Wish I could offer some new advice but for me it is just a case of keep taking the tablets and keep walking.

Hi Meriel. I was diagnosed a year ago as having fibromyalgia,by my consultant rheumatologist. I have it on top of osteo and rheumatoid arthritis. But I suspect I had been afflicted with it for a couple of years before I was diagnosed,due to the various symptoms,and doing a bit of research. I never mentioned my suspicions to my consultant,she was just asking me questions about my general health. She then proceeded to test the various 'trigger points' on my body,and concluded that she was certain I had fibromyalgia. I was given a fairly low dose of prednisolone steroid (5mg a day) for a couple of months,which helped a bit,but wasn't allowed to continue on them due to my weight,and the bone -weakening issues associated with prolonged use. I have also been given amitriptyline to take as low dose at night (10mg) as,although it's prime use is as an antidepressant,in low doses it can help sleep if you are in chronic pain. I have found it quite helpful,although I think after a year,I am building up a tolerance to it as it doesn't seem to be quite as effective now as it was at the start. One of the worst things I find about this condition is the 'jumpiness',and sensitivity to loud noises and bright light,which I am told is caused by my nerves being over-sensitive. If an emergency vehicle goes past with it's siren blaring,I have to put my fingers in my ears because it literally hurts me! Although I know not everyone with this condition is affected in this way. I have to take 2 tramadol twice a day to help with the pain in my joints,and they do seem to help with the FM pain. And I keep myself topped up with paracetamol in between doses. Keeping active and mobile (within reason) definitely helps too,as I find if I don't go out for a day or 2,I seize up a bit. Go easy on yourself,don't push yourself too hard. I find a healthy diet with minimal junk food helps too,although you no doubt know this already! Take care and hope you feel better soon.

Sorry OP I didn't mean for that to be quite so long! When asked about my ailments I go into full waffle- mode!

my lovely daughter has Fibromyalgia and we discovered ACTI PATCH ,she was very sceptical about it but after just one days use she said it transformed her life.She's been using it for a few months now and although she still has "flare ups" she seems to cope with them better with her patch .You can buy it online or at Boots or Gordons Chemists ..maybe others but its those we buy from.I would certainly recommend it for pain relief in these types of disorders.Make sure its the patch that you attach to your back ,she wears hers at waist level.Hope it brings some relief

SPANGLES 1963 ....my daughter has cut her medication by half while using the ACTI PATCH ,that has helped with what she calls brain fog too

paddyann - Thank you. I will be looking into this!