i suddenly developed debilitating pain about 2.5 years ago... after a year of going back and forth to doctors (never the same), i was almost unable to walk, get dressed etc all this time, i was finally given a diagnosis of PMR, and saw a Rheumy 3 months later... he laughed at the diagnosis (said i was to young, in my early 50s). He said i had inflammatory arthritis, put me on Methotrexate, and later Leflunomide, high dose of dihydrocodeine.... none of it worked... this has gone on for 2 years... me begging him to give me steroids because that is the only time i am out of extreme pain (had them 3 times for flu/chest infection)... he would just laugh at me, telling me i was wrong...
i found a private GP, who i saw 3 days ago... explained my painful story... she immediately said if you are pain free on Pred, then i will give you Pred... and diagnosed me with PMR... 3 days later i am 90% out of pain, and am getting my life back...
it feels like a terrible battle is finally coming to an end...
thanks for reading
Written by
caterpillar
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Thank goodness for your commonsensical GP.Your Rheumie doesn’t sound very switched on and is a sadist for laughing in the face of your suffering. Ditch him if you haven’t already and get one who understands PMR. Someone on here maybe able to recommend a good one. Where are you.
I’ve waited 3 years plus for a diagnosis along with miss diagnoses can’t even start to count appointments and wrong meds I have taken, as I have lived in Thailand 6 months in the year for the last 10 years ignorant of Pmr and Gca. Now have Progressed to gca after a new doctor came to the practice I live in Carlisle where like others not much known about does anyone know a private rheumatologist in this area I know we are All in the saMe boat but I’m getting nowhere Fast all I get is to see a nurse to take my bloods every month haven’t seen anyone Face to face for months I now have breathing problems with methotrexate and a hernia with Alendronic acid. HELP sorry to moan but I’m getting desperate. My anxiety levels sky high which doesn’t help This awful illness. 😭 On 25 mg prednisone trying to keep my spirits up but with no sleep it’s hard as you all know. God bless you all and all youR wonderful words of wisdom. 🙏🏽
Hello and welcome to this great forum where I know you will get lots of invaluable support and information. Your story is horrendous - it is terrible you had to wait SO long for an accurate diagnosis - but regrettably not unusual in terms of what many others have conveyed on this forum. You must be feeling very relieved to be almost out of pain and no doubt now able to do things you haven't for ages.
There are several very 'expert' people here and they will be able to recommend the very best essential info for you as you negotiate your way through PMR. It is for example important not to overdo things and 'pace' yourself as Pred only deals with the inflammatory aspects of the illness - most of us learn that the hard way - but it is quite true.
Caterpillar: I would say your treatment was unbelievable, but of course it isn't. The fact that this happens as often as it does is just unconscionable. Doctors who don't listen, don't think, and are ignorant should be sanctioned.
I hope your road to healing will be smoother than your road to diagnosis.
So happy you are getting the relief you deserve. What a relief. All those unnecessary drugs too. Hope it's onwards and upwards!🌻
❤️ Heartbreaking....why in the hell wouldn’t any Dr give you a trial of prednisone? I am so sorry you had to endure such incompetence.
You’ve come to the right place....this amazing forum will provide you with so much information and so many solutions....
Between the prednisone and this forum...you’re on your way to some relief and a feeling of taking control for the first time in a few years!! ❤️
Oh my goodness, two and a half years!!!!! I am godsmacked! I wish you nothing but the best and hope that you are one of the lucky ones, who gets to taper down easily and off the Pred forever! Good luck!
Yes I had that problem ,nearly 2 years working on and being ignored whilst your mind runs riot . Just ''here take more painkillers '' which don't work as you get worse .Glad you have the help you need now . I was self employed and my business slowly ground to a halt ,I am not whining just empathising . Don't be alone there is loads of information here from people who have this situation .
yes, i am self employed as well, have had to cut down to the bear minimum, after building it up over 12 years... sad really... thank you so much for your empathy... gratefully received... i feel for you over your business....
What a sensible woman!!! One is left to ask why the rheumy couldn't treat the patient/symptoms and not his ego - since the top experts in PMR in the world all agree that over 50 is right - even though they disagree with us that people in their 40s can have it too. Rare - but it happens.
And it's hard to know whether no diagnosis as I had for 5 years or mis-diagnosis and being given the wrong medication as you had is worse. At least you knew pred worked and someone had got it right - which put you ahead of me in some ways.
i was lucky/unlucky to get flu 3 times over the last year, and then a chest infection each time.. they gave me prednisone for the chest infection, and each time i was out of pain whilst taking it... it didn't take long to put it all together... it was just trying to convince anyone else which was so frustrating....
Thank you for sharing and so glad you finally are getting relief. I too went thru madness with doctors they wanted to operate on my back (herniated discs) then when I pushed back they blew me off. I finally found my doctor who found the PMR and it has been much better. I still have back issues but the PMR is way worse.
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