Hi
Just coming to terms with my diagnosis and after a miserable time on 15mg pred have come off altogether . How many people manage this condition without steroids ? Have to see dr in a couple of days so can find out ore then . Good to have this chance to talk to others going through the same thing .
Hi Hilmae,
Welcome.
Short answer to your question - very few, if any!
Sorry if that's not the answer you want, but Pred is the only drug that gets the inflammation under control until the PMR burns itself out, goes into remission or whatever it does, and that timescale varies from person to person.
Yes, the side effects of Pred can be very miserable, but if you do not get the inflammation under control, then you will continue to be in pain, and if not treated PMR can lead to GCA which is a much more dangerous animal altogether.
Suggest you do more research about PMR before you see your doctor ( there are things you can do to help reduce inflammation in your body), but I'm sure he will say the same - Pred is the only guaranteed way to control PMR.
Thanks for the welcome and your honest answer . I think I am fooling myself thinking it will all go away if I just ignore it for long enough . I also don't know whether the pain I have now (after 3months of it ) will get worse or does it sort of plateau and you stay at a certain level . I have been doing some reading but because everyone goes on steroids they don't mention this as I suppose once on treatment you can't say . Feeling a bit miserable but will get my head around it soon . Thanks again
Hi again,
You are not alone in not wanting to admit you have an illness, and wanting/wishing it would go away. I think we're all like that at the beginning, but you wil come to terms with it, and hopefully manage it without too many problems.
Like Celtic, I was undiagnosed for 18months, and although not bed bound like her, I did develop GCA, eventually losing the sight in one eye before it was eventually diagnosed.
I do know the side effects of Pred, but I also know the danger of not taking it - and I know what I would choose, given the choice.
Take care.
So kind .i feel I would like to have a cuppa with you and a chat . Makes me feel better
Hilmae, when failing to get a diagnosis, I managed what I now know was PMR without steroids for just under a year when it spontaneously went into remission. BUT I spent 3-4 months of that year in bed in severe pain and travelling to rheumy appointments by ambulance and wheelchair. At the end of that year, all the pain returned together with even worse symptoms and eventually both PMR and GCA were diagnosed and 40mg of Prednisolone was prescribed. So my reply is really just a warning: if you fail to get the inflammation of PMR under control - and the only tried and tested treatment is Prednisolone - you run the risk of succumbing to far more serious conditions, not least GCA with its risk of loss of sight.
Thanks for that . I wrote a big reply to you but it has got lost . Technology is not my strong point . Really appreciate the answer though .
Sorry Hilmae but I'm afraid we all come to the same conclusion - life may not be much fun on steroids but believe me it is far worse and more dangerous without.
I had a friend of nearly 80, a keen golfer who went on to Prednisolone. He got on fine with a fairly low dose so they took him off and within a short time he was back in hospital with a horrible relapse so they put him back on again and he immediately felt better and then lived on steroids to be 103! He eventually gave up his golf and stopped driving but had a very good life, so don't be too afraid of steroids!
Best of luck! Cemmein
Thanks Celtic
I think I am beginning to get the picture now . It does take a while for you to get your head around it all and as with most things we think we can carry on and it may go away . Really grateful for you help and opinion I shall certainly take it on board .
Hilmae
visit these websites:
PMR&GCA UK - national organisation
PMR GCA Scotland
PMR& GCA uk North East Support.
You can also buy a book by Kate Gilbert - on the national site
and booklet ' Living with PMR & GCA' and a DVD ' You are Not Alone' on the North East Site.
You can also find out if you have a Support Group near you.
and a vidoe on You Tube
Knowledge is Power.
Hi Hilmae. I had the same feelings when first diagnosed. The Pred got my GCA under control quickly but I suffered with the phycological effects of diagnosis and the side effects from the Pred. I was in denial, I was angry, I thought I could fight it. But I have learnt that you have to live with it. You have to make changes in your lifestyle. 18 months since diagnosis I am in a much better place pshycoligically and GCA still under control. It takes time. Research as much as you can to understand the condition and above all, be kind to yourself X
Thanks for all the comments . It certainly makes you feel less alone . I will def look up all the sites and learn as much as I can . Feeling a bit better now but it seems to go that way .it is always the night and morning that are so rubbish . WHY ? Something I need to find out .
Hi Hilmae, this is my second try at this post😬
In the beginning....I, too, refused prednisone. I only knew the drug from my mother's experience, and she always said, "that dammed prednisone, I hate it!!!"
So like a good daughter, I followed mom's path, and was ready to hate prednisone.
How wrong I was...., I got to the point that I could not put my bra on, lift my arms to brush my hair, or roll over in bed. I was unsafe to drive my car, due to the pain.
I gave in, and started taking the dammed prednisone.
Well, ....drumroll here.......prednisone has become my best friend, in spite of the negatives you hear about. I got my life back, and nearly 3 years later, I am coming to the end of PMR.
So, choose your path mindfully. Read this forum from start to finish, and know you are walking a path well trod by others who came before.
Good luck a you dance with the dragon. .......Jerri
I like that . Dance with the dragon .yes ,I think I will have to and cheers for you wise words . I need them at the mo.
I was taking Naproxin for six months and my G.P. never mentioned pmr, I blame myself because I missed doses, in October2015, he said he was sending me to see a rheumatologist but again never mentioned pmr. I developed jaw tiredness, swollen arteries in my temples (which were not tender), and sight problems (flashing lights across the eyes, a lowering shade across one eye) in November2015 I went online and saw the things about T.A. and rang the Dr. who told me to go to A&E, he then told me about T.A. I had a biopsy in Dec.2015 which was "non specific",but I had been on pred. for nearly a month then. I have since read that if you don't get pmr. treated (or stupid me, don't take the tablet's) then it can lead to T.A.
I hate to put a 'downer' on your experience, but I have been on steroids for over six years and every time I get off them I have a flare-up and have to increase them again. I have also been on steroid reducing drugs, but most of them give me intolerable side effects. Keep trying - we don't have much choice.
Aren't you in agony without pred? It was like a miracle when I first took it. I could not get dressed or even leave the house in the end before diagnosis, the pain was excruciating, it could take me an hour to pluck up courage to get out of a chair because of the pain. If my nose itched I put up with the itch as moving my arms was so painful. I think back now when I was in bed and could not move without awful pain. I suppose the pain might have plateaued, but my life was not worth living.
Yes it has not been good at all . Have gone back to the pred (reluctantly ) .hope you are keeping well now
I had PMR for 5 years without being on pred - not out of choice but because it wasn't diagnosed. Nothing would induce me to go back to trying to live without pred and I had some delightful side effects - NOT!
I became almost housebound - I could only go somewhere if I could drive right to it and park. When I had a major flare and other problems at the same time and was stopped frm driving for a few months I WAS housebound. Walking more than a few hundred yards was impossible. If I got to the gym and did an aqua class I could move fairly well - but I was never out of pain. I crawled upstairs on my hands and knees and stomped down like a toddler, one step at a time. Without the car that wasn't an option. I was depressed and I put on a lot of weight.
I've had PMR fr 12 years and in that time it has never gone into remission - it has been a bit better or a lot worse but never gone away. Without pred I'd have no life, with pred I have a pretty normal life.
And it isn't a case of pred is bad, no pred is good. PMR is due to unmanaged inflammation in your body - and left to itself it increases your longer term risks of cardiovascular disease and even cancer.
No way do I want to feel that bad . Definitely going to sort out the pred so I can move about better. Thanks so much for telling me how it was for you . I already am in remission from skin cancer so whether it has more chance of recurring now I am not sure but going a day at a time and trying not to worry too much . Cheers
New GCA diagnosis 
New/No Diagnosis
New GCA diagnosis & overwhelmed
