Should I suggest to my GP I think I have PMR?
Posted , 11 users are following.
Hi
I have had bad shoulder and neck pain and stiffness since the beginning of July. I took ibuprofen for two weeks as this has worked before for me and then rang GP as I felt I needed Physio. ( I had meningitis when I was 28 and physio helped lots and since have had lots of neck injuries which physio have fixed.)
The receptionist said there were no appointments and to ring the next day. I was in so much pain and could not turn my head to see out of the drive when I needed to drive to work, I felt needed to do something, so rang Physio, said I could self fund and was seen the next day.
My neck and shoulders were solid. I had very limited movement. I had physio 2 a week and my neck felt better BUT then I got really bad pain in my hips and thighs. I had difficulty walking, was very stiff in the mornings but better by lunchtime. I have really bad hip and thigh pain at night and wake with the pain. By end August physio was worried.
The physio checked me for MS as my mother was really worried by my walking. I went to the GP who said he thought my walking was fine and did not know what was wrong with me. He asked me direct what did I think was wrong with me ! I did not know apart from I am in so much pain some days I cannot get out of bed or in the bath or get dressed!
He did some blood tests and they came back as a high C Reactive Potein. The normal is 1.5 to 5 and mine is 18. He said that we need to do the test again and then he would refer to rheumy if still high.
An hour later he asked me to return to see him as he thought he ought to examine me for Guillane Barre syndrome and kept asking me about my breathing. I have a friend with GBS so know about it. Friend went into hospital 6 months ago and is still there! GP decided to ring on call neurologist who said do an urgent referral and I should be seen in 2 weeks.
So I have sat at home and panicked! I have checked Internet for Guillane Barre and my symptoms do not fit.
I found PMR and it fits. Should I be bold and ask to see rheumy and ask for pred? Or should I see neurologist and wait and see?
My pain and stiffness are so bad I cannot do so many things. I have good days and bad days.
I am female and 50.
Apologies for a very long post. Thank you in advance. Forum is wonderful. Jane
0 likes, 52 replies
carmel83758 jane0118
Posted
bedilia carmel83758
Posted
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!
jane0118 bedilia
Posted
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!
Oregonjohn-UK bedilia
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EileenH bedilia
Posted
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.
bedilia EileenH
Posted
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
EileenH jane0118
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jane0118 EileenH
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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 !
MrsO-UK_Surrey jane0118
Posted
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.
Mrs.Mac-Canada jane0118
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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
EileenH jane0118
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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.
EileenH jane0118
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Oregonjohn-UK bedilia
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bedilia Oregonjohn-UK
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Glad we could clear the air. God Bless!
Christine
jane0118 EileenH
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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!!!
EileenH jane0118
Posted
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.
jane0118 EileenH
Posted
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!
twigjean bedilia
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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.
EileenH jane0118
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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!
jane0118 EileenH
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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.
EileenH jane0118
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MrsO-UK_Surrey jane0118
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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.