I have been asked to post this by Peachy6958 who is struggling to work out how to use this forum - like many of us have at some time or other I suspect! I'm sure the mysteries will be revealed sooner or later!
"This is my first post. I felt I had to write as I have actually had a major breakthrough today. I was diagnosed Sept2017 with PMR. I strongly believe that i have had PMR for at least 6 years or more. The first four years i never went to the docs and just put the symptoms down to advancing years. In 2014 the symptoms became much more severe and could be ignored no longer. The doc thought I had a hernia but eventually this was discounted. Then she thought I had hip problems and arranged an X-ray. When this came back normal she also put it down to advancing years and left it at that. In 2016 the symptoms became much more severe and debilitating so I went back to docs. By this time i had moved house and subsequently a different GP practice. But still no diagnosis. I saw this GP maybe 4 times that year but kept being treated like I was some kind of attention seeking idiot. Eventually I had to be quite firm and tell her that something was very wrong and that I was not imagining it or making it up. By this time I was in trouble, particularly in the mornings, trying to get out of bed and into work. She decided to do blood test, the results of which were inflammation markers raised but not enough to warrant any treatment. Several months later I insisted on further blood tests. As luck would have it my GP was on holiday when the results came in and another GP looked at the blood results. I received a phone call from the practice requesting I call in and collect a prescription for Prednisalone. Miracle, 48 hrs later I’m feeling so much better and massive relief from the debilitating pain I had been living with. To cut a long story short, after joining this website and learning so much from it I decided I was not willing to take the AA which I had been prescribed. I requested a Dexa Scan which would enable me to make a much more informed decision as to wether I should take this medication or not. Over the the last nine months, since diagnosis, I have twice been refused a Dexa and told to take the AA. Today I saw a locum GP, she asked me how I was getting along with the meds. I told her that I was taking the Pred and Adcal but not the AA. She was genuinely shocked and asked me why. When I explained she was even more shocked that I had not had a Dexa Scan. She was brilliant. I related to her as muchof the information that I had learned. She asked me if I was medically trained. No, I said, this is information I have learned from medical research documents that have been posted online on the PMR/GCA website. 5 hours after leaving this appointment, this amazing GP rang me to tell me that she had arranged a Dexa Scan for me. I cannot thank this lovely lady GP enough, she not only listened to me but was willing to put her neck out and arrange for me to obtain the information I need to make an informed decision. If the scan results come back and show that I do have bone density problems then I shall quite happily take the AA but if the results show I have good bone density then I shall continue to refuse the AA and carry on making sure that my diet contains as much nutrients as it needs to maintain that existing good bone density. Many thanks to all of you. Without you and all the information you share with us I would have been totally at a loss."
Written by
PMRpro
Ambassador
To view profiles and participate in discussions please or .
Peachy6958 What a story. So glad you finally found a doctor who was willing to take you seriously, and then the locum. When you get your DXA scan results, even before you agree to take medication if doctor believes it's warranted, please have a look at this:
What an interesting post....sad in parts and frustrating, but finally a good result. Why it all should be such a battle beats me, I often wonder how people coped years ago without these type of forums....
That was such a heartening story Peachy6958. I wonder if she was newly trained. Well done for taking charge of your health so persistently. I sincerely hope that the rest of your journey with PMR will be short and smooth. You are certainly not a wimp about pain.
Peachy 6958 : Suggest searching out an excelleent book onn treating osteoporosis without and of the bisphosphonate drugs : Your Bones by Lara Pizzono - Your Bones: How You Can Prevent Osteoporosis & Have Strong ...
Your Bones: How You Can Prevent Osteoporosis & Have Strong Bones for Life Naturally [Lara Pizzorno, Jonathan V., M.D. Wright] on Amazon.com. *FREE* ...
I reversed my own osteoporosis by following her protocol. Namely Strontium CITRATE and a few supplements to support the Stront Cit.
No. Stront Cit has not hit the prescription pad as it is a cheap and cheerful substance that pharma will not be able to make a packet from. One French company, Servier, tried. They bulked it out with a selection of adjuvants that included aspartame and maltodextrine and ended up with a product that caused some rather nasty side effects. The French product was withdrawn from the market place.
Meantime, Strontium CITRATE and the supporting supplements are doing a grand job.
Hope that your DEXA scan comes back A1-OK. Well done you for tenacity, sticking to your guns. Take care, go well.
Good on you for persisting and arming yourself with knowledge. I have a few health things going on and try and make myself the expert on my variation/type/whatever of the issue I'm diagnosed with because I know my body best, I'm in charge of looking after it and will pursue answers and treatment until I'm satisfied I'm getting better. I seem to have recovered from a few unrecoverable moments so I know it works. My wonderful GP accepts I am passionate and persistent 🤣
Not for the first time I find myself reading a post where a patient has to battle over a very long time in order to get a diagnosis before finally, getting the appropriate treatment. It seems to indicate to me that GPs simply don’t have the awareness of this condition - MB’s(?) initiative in ‘direct action’ to remedy this situation with surgeries looks to be ever more necessary!
Even more baffling for me however, is how some patients are able to endure the effects of PMR and the impact on their daily life over such a long period - I went from (reasonably) fit to practically crippled in less than a month! So - we’ll done Peachy for getting this far and I wish you well for your ultimate recovery!
A lot of the medical literature says PMR starts suddenly - in some patients it can be overnight they say. For me it took months, progressing from a vague stiffness in my shoulders that stopped me sleeping in my favoured position with my arms above my head to an all over stiffness and vague muscle pain which worsened over the following 5 years (yes, years) and was blamed by my GP on "your age". I also had had what were probably myofascial pain syndrome problems for many years and I had kept them under control with Pilates and Bowen therapy and once the PMR started I added aquafit. But each flare of PMR is heralded by wrist pain and then a real paddy on the part of the MPS - which leaves me practically immobile. It was one of those that sent me to the computer and an internet search - not easy 10 years ago!!!!
My left wrist has been sinful this week, even had to take my watch off, and driving....ouch! Also back is tired and aching. Will keep watch. Increase from 7 to 10 yesterday has definitely eased wrist, back doesn’t really want to support itself yet. Maybe another day or two at ten. Interesting, thanks.
Like PMRpro my GCA built up steadily over a period of 18 months getting progressively worse - and sometimes that way it seems more difficult to diagnose especially if GP has gone off on a tangent at very beginning! And has mind closed to PMR/GCA!
Plus if course it was 10 years ago, and despite this story things have moved on - a bit!
Wow Peachy6958 your story could be my story...right up to the part where the lovely GP (Fairy Godmother) appears stage right! I too have been refused the Dexa scan, and I quote 'Oh, we don't do those here, we just assume that everyone on Pred will need to take a drug to prevent Osteoporosis!' Well then it's clear what I must do....where do you live and what is the name of your GP...my house is on the market!
"we just assume that everyone on Pred will need to take a drug to prevent Osteoporosis"
Which is all the more reason to monitor it - because in fact studies found only about 40% of patients on pred develop serious loss of bone density. But about 50% of the US population will have osteoporosis at some point in their life anyway...
Good for you for persisting! Also welcome to the site which I hope you will be able to access soon- I've had problems this last week too with site. Unfortunately this GP saga is a regular story and it can be hard trying to get the help we need from our GP. I am also moving soon angiek( in theory anyway- it's not until you've signed!!) but as I went into my old GP practice the other day I realised I had been going there for 18 years and really did not know my GP or I believe does she know me ( our relationship broke down further I believe when I went private to Consultant Rheumy for confirmation of GCA) You just have to use the system where you can to your own advantage I believe but can be a time wasting and exhausting exercise whereas if we could all work together it would be great.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update from Marilyn and Caution (not to attribute all symptoms to PMR and / or Pred.
Action Plan Update-Get a Dexa Scan- Easier said than done.
Thank you All (from 'John Wayne') 
Well at least that’s one less thing to worry about.
GP disagrees with diagnosis of osteoporosis 
