Should I suggest to my GP I think I have PMR?

This is so common in trying to get a definite dx of PMR.  Doctors are either ignorant re dx or just plain stubborn.  And unfortunetely, a lot of patients are just too complancent, especially if the have NHS or some other government run insurance plan.  I see this a lot here in the USA since "Obamacare" has been implemented!  It is cheaper to let a patient just quietly fade away than it is to provide basic medical care.  

These kinds of programs are great for healthy individuals, but have a real disease and you are out of luck!  We. as patients, have to be more assertive and demand proper medical care!  

Hi Bedilia

Thanks for the reply. I don't think anyone who knows me would call me complacent!!! 

I have chased the hospital and got my neurology appointment for Wednesday, so 16 days after referral. 

I have tried stopping the ibuprofen and paracetamol - I could hardly walk. Everyone at work told me to go home sick. I am seeing GP tomorrow and will be asking for him to consider PMR. I had a look at answers .com and the reply was to be seen by both a neuro and a rheumy!

The NHS is great providing health care for everyone, but, sometimes it can take a bit of time to get there!

Bedilia - a very general statement!! -  I have found the complete opposite with my local doctors practice here in the UK.  He admitted, after he sent me for a blood test, that he had an idea what was wrong but wanted it confirmed. He even phoned me to make an appointment the day he received the results (two days later!) and started me on Preds immediately.  I spoke to a hospital consultant I know and he said GP's do a very good job and if they are not certain they will refer - after all they are 'general' practitioners, bit like a 'Jack of all trades'  not 'experts' in one aspect of medicine.  It's a bit like asking a specialist consultant in hospital about another area of medicine he/she has never had any experience or training.  And to cap it all it's free for all in the UK, and retirees stop paying NI, unlike private insurance payments which goes on and in some cases doesn't always cover everything.  The satisfaction factor by patients, and the public at large, is that the NHS does an extremely good job.  

Sorry bedilia but like Oregonjohn I have to disagree with you here. There are outstanding medics in the UK and other state funded healthcare systems too. My husband would be dead without the UK NHS - and so would I and a daughter. And what is more - it didn't bankrupt us. It isn't perfect no - but by god it is there when push comes to shove believe me. And now I'm in another state-run system that is similar in standard to private medicine in the US and have also experienced another in Europe. What we don't tend to get is unnecessary testing and procedures - many of which have longterm consequences themselves.

Believe me, in the last 5 years I have come across plenty of people with PMR from your side of the pond who have struggled both to get a diagnosis and correct care - with insurance. Even some of the rheumys have admitted that the USA struggles a bit with PMR and GCA. 

The main reason it is difficult to get a dx is because all autoimmune disorders present conundrums. What is a problem is persuading doctors that pred - the ONLY medication that deals with the symptoms - should be used. You yourself have referred to it as a "devil drug" - I know you mean for you personally but it isn't always clear that is what you are saying. There is a range of things that can cause polymyalgic syndrome and the trick is to identify which. You cannot make a definitive dx of PMR - there is no test or finding that confirms it 100%. It is a clinical decision based on a combination of tests and symptoms. Whilst it is the most common rheumatic disorder in over 70s that is not the case in patients in their 50s and early 60s - and it often manifests in them during or soon after the menopause which itself can cause many of the symptoms. Add to that the fact that our mothers and aunts almost certainly had it but classed it as "my rheumatics", a natural part of growing older. WE know that it is possible to do something about it in a lot of cases - but it could also be another inflammatory arthritis. It can present almost identically to late onset rheumatoid arthritis. Or psoriatric arthritis. 

A few people have had good service from an NHS consultant who they paid good money to see privately - but who immediately added them to their NHS list. And others have had rubbish relationships with doctors in private practice. 

 

Eileen and Oregonjohn, it was not my intention to make a blanket statement re NHS or any other government funded healthcare systems.  The point I was trying to make is that having a disease like PMR or GCA or any other autoimmune disease can be a long drawn out process for the patient.  There are certain signs and symptoms, and lab tests and special procedures which a patient must go through in order to get a final and definiive diagnosis.  And even then the physician you are seeing may be second guessing your results.  

I have found this to be true of private pay patients and patients who are with NHS or some other government run entity.  There are good, not so good, and mediorcore  and just plain incompentent physicians in all health care systems.  My whole point is that we, as patients, cannot become complacement and take no for an answer.  If we feel we are not being taken seriously, then it is up to us to stand up and demand better care!   This is what is wrong with healthcare today,  People treat physicians with respect they may not deserve.  Just because someone is a MD does not mean that he is above being questioned.   I have seen so many incompetent physicians run rough shod over a patients plan of care due to lack orf knowledge or lack of not wanting to appear human to their patients.  

I know getting to a diagnosis of PMR is a long drawn out process,  I also have Pulmonary Hypertension and it took years before anyone could find out what was causing my PH (chronic pulmonary embolisms) and what would be the best plan of care for me.  When I was first dx'd in 2009, I was merely a "head on a body" who was unable to even get around my home without feeling like I was going to pass out and just die!  PH is a disease for which there is no cure and the prognosis is always fatal!  Try living with that!   But live with it I have since 2009 despite several episodes of near death.  

And as far as the "devil drug" prednisone, I was only relating what my own experience with it had been.   When being on prednisone makes you psychotic to the point that you feel harming yourself is the only solution it is time to decide if the cons outweigh the pros of the drug.  

I have never experienced a NHS healthcare system.  I only know what friends and patients have told me.  I am sure that there are many fine physicians who practise in the NHS.  When "Obamacare" was implemented here in the States, I could immediately see the cons of this healthcare systems.  Services that were previously available to me were no longer available.  Even my own PMD had to rethink which patients he would see, not because of any financial gain or loss, but because he was now being told how to practise medicine, by a bunch a "pencil pushers" who were only concerned with the bottom line.  

So if you and Oregonjohn find my comments to be "blanket and general "well then I don't know what else to say to you!   This is how I feel and I have never told anyone of this forum what to do re their plan of care, other than to demand a physician who will listen to them!

God Bless,

Christine in So. California, USA           

Outwith the UK it is common for PMR to be seen by neuros and/or rheumys, in the UK it is almost always rheumys. In fact vasculitis specialists would be more appropriate - but they are few and far between so seriously busy and where neuros fit in is a mystery to me! I suppose the neuro option is in case it is MS but that is all I can think of.

Hi Eileen

I think the GP felt it was the nerves in my legs as I have such pain and stiffness that I have difficulty lifting my legs, last week I could not step up to get into house! I had to hang onto the door frame with my right hand whilst I lifted my left leg with my left hand. Seriously scary.

Anyway he repeated the CRP and its gone up to 23.8 from 18 two weeks earlier, with a lab normal of 1.5 to 5.

He was disappointed that I had not been seen by neuro but that's tomorrow. 

I gently suggested it might be PMR and he was not convinced as I had neck pain rather than shoulder and my ESR was normal. He did say if neuro does not find anything I could have 30mg trial of steroids for 3 days and if it was PMR I would feel better. I suggested that the Bristol protocol is 15mg and that as I am 50 could he refer me for an urgent rheumy appointment as they like to see people before starting steroids if possible.

He was fine with that and has referred me to the Flare clinic.

THANK YOU EVERYONE WHO HAS POSTED - YOU GAVE ME THE CONFIDENCE AND INFORMATION TO ASK THE QUESTION !

Jane, how frustrating that no-one has just agreed to try the 15mg as a trial dose.

I've just received an email from someone who was in a similar position to you a few weeks ago when I had suggested the 15mg trial dose of Prednisolone and he returned to his GP taking along a copy of the BSR guidelines for the diagnosis and treatment of PMR.  He was immediately started on 15mg and says he has felt fine ever since.

Let's hope that your neuro comes up with something which gives you relief from all this pain.  Lots of good luck wishes for tomorrow.

Hi Jane, I read your post about your leg pain and I experienced that as part of PMR. I would gage how my day was going to go by the ability to get out of bed then next by how easy/difficult it was to step over the 3 or 4 inch lip to get into the shower. I actually had more trouble with my legs and muscles in my behind than I did my arms.

Hope you are able to try the pred soon. I was better after about 9 hrs but my Dr. started me at 20mg.

Best wishes

That was how my PMR started when I was 51 - I realised I was having difficulty doing step classes at the gym! It felt as if the spring in my feet had gone and my thighs got so tired so fast - but it was slow in onset so it didn't really register at first. Then I tried the cross-trainer at the gym to start getting ready for the ski season and I had to stop after about 2 minutes because of the excruciating pain in my thighs: typical claudication pain but the GP I saw didn't recognise it. Had I seen another doctor in the practice it would have saved me 5 years of pain but she was on maternity leave on and off for a few years so it was quite difficult to get an appointment with her.

I haven't even THOUGHT about having a bath for the last 10 years because I'm scared of falling getting in and convinced I'll not manage to get out! Thank goodness for showers ;-)

And perhaps your GP should know that ESR doesn't always go up and CRP is the preferred indicator nowadays - about 1 in 6 patients never develops an "acute phase reactant" anyway.

Oooops - forgot to mention I could only get up the stairs at home on hands and knees. Anywhere else if there wasn't a lift - I wasn't going there! I actively avoided going to visit people who didn't have a downstairs loo and it was when I moved to a house with only an upstairs bathroom that it all went totally pear-shaped within weeks. I was in so much pain and exhausted it was unbelievable.

Bedilia - I may have reacted as I have a high regard for the NHS here in the UK. I spent sometime just north of you and nearly didn't return to the UK because I loved Oregon.  There are pro's and con's in all medical systems.  I had no experience of the system in Oregon as I didn't need to use - thank goodness, but I'm very thankful of my experience since the start of PMR some 3 months ago.  The last time I was in hospital was in 1957!!  Possibly part of that was the good clean air and lifestyle whilst working in the US.  Apologies for any retort I made to you no offence was intended.

John, it's all good.  Thank you for your apology,  I unfortunately have been in the hospital more times than I care to think about, the last time being in April of this year, to have my gallbladder removed.  I live in southern California, born and raised here.  Oregon is a beautiful place to be!  

Glad we could clear the air.  God Bless!

Christine 

I stopped painkillers for 24 hours so neuro could see me at worse, I had real difficulty getting out of bed as bet stiff, gave up having a shower as could not lift my leg over lip of shower tray.

Saw registrar as consultant away. He examined me and felt it was not neuro. He said I needed to back to GP to ask to be referred to rheumy. I asked about bloods and my raised CRP and he said oh don't worry its just noise. I asked him if it was PMR - there was even a leaflet in the waiting room- and he said he thought it was post viral syndrome and steroids would not help. He agreed to do so more bloods to check my ESR and CRP again.

I went back to GP and checked referral had gone off, then chased rheumy and have appointment in three weeks. Feels like a life time away. So it's back on the ibruprofen again!!!

I don't know - you'd think some of them could think outside the box wouldn't you! What exactly did he mean by "it's just noise" I wonder - what a meaningless statement.

Post viral syndrome - how often have I heard that. Translation: "I don't know and can't be bothered so we'll just say it's a virus" How does he know it won't work - the only way he could know is by offering a moderate dose pred trial. The rheumy I saw gave me pred to "help you over this trip to the USA" - within 6 hours I could move after 15mg of pred. But when I tried to tell him the almost miraculous effect he didn't want to hear. It is typical of pred-responsive PMR - not other forms of polymyalgic syndrome.

Better luck next time.

I was not impressed with him. He put on my blood form

50 female lots of aches and pains a d muscle weakness.

I really felt insulted. He did not want to start me on pred as he said I would need to be on it for a year and I would need monitoring with blood tests so he did not want to that.

Feeling frustrated, want to try pred, and I need to go away for work for 4 days week!

I must reply, here in Michigan, no one has complained as bed ilia. There a lot of controversy and mistrust about The 

Affortable Healthcare Act but it's not a year old yet, we just need to give it a chance. I'm 73 so I have Medicare and not under this program. In the States there are many different health programs.

 

Ah - the "hysterical female of a certain age" response that is oh so common! As for a year - you should be so lucky, I've had PMR for 10 years I'm afraid! And monitoring with blood tests doesn't mean weekly - it means every few months and it os done by the GP, not him. I wonder if he tells patients who need warfarin he won't give it them as they need to be monitored? 

I hate to say this but a doctor like that often responds better when you take your male partner with you - it seems to concentrate the mind. He didn't know and he wasn't admitting it to anyone. I can only repeat - better luck next time!

I did take my male partner! Just imagine what he would have been like otherwise.

I know the CCG chair and will be having a conversation.

So yes I will not be recommending that department for the Friends and Family test.

Good grief! I can't say what I really want to - I'd be banned for bad language. Fingers crossed for karma activity - early onset PMR that noone can diagnose would seem appropriate don't you think? 

Jane, I feel so frustrated for you.  I do so empathise with how you feel especially as due to non-diagnosis for a year I spent 4 months of that year bedbound and in agony, with a rheumatologist, and 4 GPs unable to diagnose me.  I owe my eventual diagnosis to the most wonderful pharmacist - unfortunately not before GCA joined in the fun, following which I requested referral to a highly recommended rheumy.

Have you downloaded the BSR Guidelines I referred to earlier, highlighted the pertinent parts and taken them to your GP?  

Although we shouldn't have to, I'm in touch with several PMR and GCA patients who have paid for an initial appointment with a rheumatologist - worth a try for you perhaps.