doctors should listen to their patients - PMRGCAuk

PMRGCAuk

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doctors should listen to their patients

zabzab12
zabzab12

Hi all my husband had another phone consultation today trying to convince doctor he has pmr , she just gave him pain killers which we didnt even bother picking up , as he was given pain killers and omeprazole last week cost £18 30 might as well have eaten a chocolate button for all the use they were. yesterday he got a letter to make an appointment at rheumatology clinic he had the choice of 3 hospitals, 2 hospitals had no appointments at all the 3rd hospital offered an appointment for end of december, but warned no treatment will be given for at least 32 weeks, he begged doctor today to put him on prednisolone as he carnt cope any longer with pain or lack of sleep she said no,so he said can you just try me with the steroids for 1 week as he has had pmr before and knows its the same as before ,she said no, so he is going to try and get an appointment and pay privately we carnt really afford it , but not left with much choice , just hope we get some answers and he gets treatment he needs.

56 Replies
oldestnewest

I was in a similar position in that my GP just would not or could not diagnose PMR. In the end I went privately, I was diagnosed in minutes had bloods taken and given pred. It was like coming back to life again. It cost me £250 for the consultation.

Rokerman
Rokerman in reply to piglette

Same with me Piglette - diagnosed straight away; huge relief just to know what was crippling me and, altho’ initial dose had to be raised from 15mg to 20mg, I rapidly started to get some semblance of life back. Shouldn’t have had to go down the private route (and I had to be cajoled by my wife, it must be said) - it proved to be the right thing to do and worth the £250.........

How frustrating for you both. That fact that your husband has had PMR before should surely tell the doctor something. Also shocked that you have been told no treatment for 32 weeks! They don't need an operating theatre to give you pred. Honestly words fail me. So sorry and hope you find a solution. A different doctor maybe?

Suffererc
Suffererc in reply to Hollyseden

Must be a major 'operation' to write a prescription or even type it into the computer😂

Like Hollyseden, I would have probably tried to see a different doctor. You're entitled to a second opinion if you're not entirely happy with opinion of regular GP.

Not an unusual story! Going private IS expensive but the lack of pain (when he gets the pred) will be well worth it.

Good luck! 🍀🍀

Pitiful.

Having worked as a GP for 35 years, I retired 2 years ago, and instantly managed to pick up three long term conditions including PMR. I have been shocked and embarrassed by the lack of listening and understanding from the professionals I have come across since I retired - sudden I'm an old fogey who knows nothing!

My GP too, wouldn't countenance PMR, as my ESR and CRP were only just above normal levels (despite 20%+ of PMR having normal blood results). I was given a prescription of Co-codamol despite telling them that it wasn't normal for someone of my age to get stuck in a bath, unable to get out (amongst other symptoms). Even after I took myself off to a private Rheumy, the GP was very unhappy to continue to prescribe steroids, and it needed three phone calls to get Pred put on my repeat prescription list.

There seems to be a generalised horror in GPs, that anyone would want steroids prescribed, despite one of the ways of diagnosing PMR is with a short burst of Pred which can make a miraculous difference within days.

The only way forward is to be persistent, polite but determined, and show your GP the huge experience of the amazing group of people on this website - you all are experts who know far more than most of the medical profession.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PainInTheDeltoids

"There seems to be a generalised horror in GPs, that anyone would want steroids prescribed, " - not only GPs it would appear reading posts on here.

Perhaps as a former GP you could enlighten us why the hate/hate relationship with some doctors and Pred exists - is it based on fact or myth?

We all know it has some nasty side effects, but what medication doesn't - and others don't seem to be demonised to the same degree. Could be long term use in PMR/GCA use I suppose - but as someone who had already lost the sight in one eye, to me it was a miracle drug that saved the second one...and the side effects, fortunately minimal despite high doses, were just part of it.

DorsetLady - I wish I knew the answer. Maybe its because I'm old fashioned and happy to take some risk of making mistakes (having chatted about all the pros and cons with the person the other side of the desk). Most younger GPs seem to be really fearful of being sued, and so minimise their exposure. The feeling seems to be drilled into medics that steroids rot your bones/stomach/kidneys etc and should only be prescribed by hospital docs, and only then under extreme conditions.

I have to say, I had a great teacher, who told me that if "I listened to the patient long enough, they would tell me the diagnosis". This still holds true, especially with PMR which I believe is a clinical diagnosis rather than one simply based on abnormal tests.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PainInTheDeltoids

I think you're right about the litigation aspect - much too common in all walks of life. Plus the talking to/listening to patients is not as good as it should be with some! Unfortunately not helped in the current climate - I do doubt if a GP can easily diagnose some things without seeing a patient...I always knew when my late husband was really having a bad time by his face and pallor - can't see that over the phone or by email.

What a shame you are retired! Many on this forum would love to have you as their GP. I am very fortunate to have a wonderful GP who listens to me and we have a mutually respectful relationship.

I am shocked that a fellow member of your profession couldn't hear what you were saying or see what was before them. I am a retired NHS professional and feel dismayed on your behalf. I hope you told the private Rheumatologist why you had to resort to seeing them.

By the way, my PMR started as pain in my deltoids!

Best wishes.

PMRpro
PMRproAmbassador in reply to Rugger

Mine wasn't so much PAIN in the deltoids as them simply not wanting to lift ny arms above shoulder height. The pain was more in the biceps.

Wow, you have said it all!.....if they don`t listen to you, then who will they listen to....to me it`s arrogance.....surely as a GP you came across worse drugs than steroids....my GP prescribes anything I ask for, but has often said I wish you could get off these.....so do I, because non of us go on them for fun do we.....you are so right about this forum, many questions I have asked on here the medical profession would not have answered.....

Do your homework with your past knowledge, as I`m sure you can to find a listening Rheumatologist.....good luck....

Some eight years when I self diagnosed with PMR after waking one morning and feeling paralysed from the neck down to my hips, and after a considerable amount of research I informed my GP of my suspicions who was not aware of the condition, blood tests confirmed that I indeed had PMR and my GP prescribed prednisolone from thereon, initially 35mg to be taken immediately tapering down over 1 week, all pain disappeared after five hours, so we know that steroid (prednisolone) is the only truly effective drug for inflammatory PMR. Over the years I have had flare ups when I have had to increase the dose temporarily but generally speaking 5mg per day keeps the condition at bay. It is true to say that many GPs are not familiar with PMR and sometimes have to rely on patient information and experience.

Deeply sad the system has trapped you in this disgraceful situ. Please pay private asap and get your life back. It's the only solution.

So sorry but I think you will have to go private - I changed gp but not sure you can in pandemic

madhouse1
madhouse1 in reply to Daffodilia

You can!! We just have done. Go inline to practice you want to join’s website snd we filled everything in online and the took photo ID and a utility bill down which they copied and a week later all done and moved xx

Daffodilia
Daffodilia in reply to madhouse1

That's great - it is a shame all is on telephone at the moment - before with our new GP we got a named doctor and an introduction meeting after our health check with the nurse - ofcourse he knew straight away I probably had PMR and sent me for blood test and then started steroids - I had a medication review yesterday (2 years on) - he is the best

I am with people advising you to get a second opinion. Is there a GP at this practice with good reputation? Have they done any tests at all? I realise that GPs may be a bit twitchy about prescribing steroids at the moment, but you should not be forced to go private. As PainInTheDeltoids suggests, don't give up.

Present your GP with your bill!!! Pointing out that this confirms what you came to him/her with in the first place so you a was my the bill reimbursing please

It’s so very unfair & my GP wouldn’t believe my diagnosis from the Rheumatologist, it was only after my 3rd Rheumy he eventually accepted that people in their 50’s do get PMR

No one wants to be on Steroids it is unfortunately the only thing that works...

Ask your GP to get your husband up to date blood work so you can take that with you to show the Consultant.

I had to pay Privately to see a Consultant when l moved house as they didn’t have a Rheumatologist at my local hospital (waiting to fill the Position)

I saw DrD privately, he put me back on MTX (Methotrexate) & then arranged for me to be seen on the NHS at the Orthopaedic Hospital but l had to wait another 6months for that appointment but at least l was starting to get somewhere!

Good Luck 🍀

MrsN

I have had PMR for 9 years and have taken prednisolone of varying doses over the years, I would suggest that you insist to your GP that your husband has blood test to check ESR level, the result should convince your GP whether your husband has PMR. Good luck.

PMRpro
PMRproAmbassador in reply to alansouthworth42

1 in 5 people with PMR have blood markers that remain in normal range - doesn't mean they aren't raised for them mind! That was the reason I remained undiagnosed for 5 years - the doctor in the practice who would have recognised what I had was part time and had at least 2 lots of maty leave in the time so it never occurred to me to ask to see her.

This is a disgraceful situation. Just at present some GP's think because of the Pandemic they can get away with anything because they are avoiding face to face appointments.

I would write to the Practice Manager and make a strong complaint about your non-treatment. I would also copy the letter to the BMC and my MP.

By the way, have you thought about going to A&E, it is quite safe to go and when you get there ask to see the A&E Consultant. It sometimes works.

PMRpro
PMRproAmbassador

Is there not another doctor in the practice? My usual GP hadn't a clue and came the same line about having to see a specialist (which is rubbish) but another GP in the practice recognised the symptoms of PMR. To be fair, by then I had seen a rheumy who had given me pred for 6 weeks but he still denied it could be PMR despite a miracle response to 15mg in under 6 hours.

Just to buck the trend and this conversation did surprise me, I had a telephone consultation with the Doc this morning and I was very pleasantly surprised. She was in full agreement with the action I had taken regarding upping my Pred to flatten a flare, and she told me not to be worried about strictly adhering to any tapering regime, as everyone is different and reacts in different ways and to carry on with whatever suits me. Going in for full bloods on Thursday then we will decide on what if anything needs to done for "bone care" and vitamins😀. Of course if my next tel. appt is with a different doc in the practice the outcome may be very different. Peter

PMRpro
PMRproAmbassador in reply to Bcol

Should ask her to put it in writing!

Bcol
Bcol in reply to PMRpro

Good idea and I might record the next one!!

PMRpro
PMRproAmbassador in reply to Bcol

Remember to ask her permission!!!

Like all your other respondents, I am dismayed but not surprised by your GP's reluctance to prescribe.

It is only now that I realise why I (probably) had to suffer PMR symptoms for nearly 9 months. During that time, a private Physio had written to my GP practice suggesting that I might have PMR and I was 'bounced around' several different GP's and was sent for X-rays, blood tests, scans, etc and prescribed strong painkillers - all to no avail with the GP's saying that they did not agree with the Physio.

After 9 months, a new (young) GP arrived at the practice who instantly said 'try pred for a week. If the symptoms go then it probably is PMR and if they don't then it probably isn't'. For me it was a miracle cure!

You should not have to pay! I would read the riot act to the Practice Manager and demand that you see another Doctor. Good luck!

How dreadful! Can you change Doctor? My doctor also wouldn’t prescribe pred when my bloods did not show enough inflammation. I was in constant pain and couldn’t move my arms. I was fortunate a friend had a supply of pred and I tried 15mg for a week - miraculous!! When I went back and confessed to the doctor she agreed to prescribe pred and agreed I must have PMR. You can’t wait 32 weeks! Why are you having to pay for painkillers? Where do you live?

zabzab12
zabzab12 in reply to Loyd

Hi we live on the wirral, husband was prescribed naproxin and omeprazole and you have to pay £9 15p per item now on prescriptions, they made no difference at all to his pain apart from adding a stomach ache as we later found out naproxin takes lining off your stomach

I assume you husband is under 60. One of the benefits belonging to the EU brought us was free prescriptions for the over 60s.

yes my husband is 54 next month,so he would have to pay anyway which we would be more than happy to do ,if any doctor would prescribe prednisolone

Loyd
Loyd in reply to zabzab12

We forget in Scotland how lucky we are to have free prescriptions. It would soon add up to a lot of money if you had 4 or 5 a week.

PMRpro
PMRproAmbassador in reply to Loyd

There is a pre-payment option - if you need more than 3 scripts in a quarter then they pay for themselves.

nhsbsa.nhs.uk/help-nhs-pres...

Loyd
Loyd in reply to PMRpro

That’s good. I do believe in our system here. Education and health should be free for all and paid for by all taxpayers.

Private appt is £200 or so but the good thing is the private prescription for the pred is very cheap! Not much different to NHS prescription charge. Might be worth considering.

You can also request to have your prescription dispensed from your Dr's surgery. Having had a private consultation doesn't mean you can't access free prescriptions from your Dr if you are entitled to them, although I agree private prescriptions aren't expensive.

Yes I do that.

Can someone tell me this, please. If a doctor doesn't listen to his patient when he is in the same small room , and presumably giving his undivided attention(and increasingly it seems that they do not), what is going to make him listen at least as well when a consultation is taking place over the phone or via video call? I have heard many times since the beginning of the pandemic that remote consultations could become the modus operandi of the near future. NUTS to that so far as I am concerned! The patient "in the now" will become of secondary importance compared to emails pinging in and other detritis on the internet.

I heard a government minister (Doormat Hancock possibly) saying how successful remote consultations had been and would probably be with us to stay. Scary if it means we only get to see someone once we get taken to A&E.

PMRpro
PMRproAmbassador in reply to DogAgilityObsessed

They'll work out a way for that as well ... I can just imagine Tigger's face when he said it too ...

He is an absolute moron ,really dont know how these doctors are diagnosing patients over the phone its a joke thats why so many people are getting misdiagnosed

Can you see a different Dr. at your surgery. Worth a try. Good luck.

Thinking back to 2017 when I first went to the Dr . Didn't know I had PMR. Saw a nurse Practioners twice who dimissed me as not really having anything. The third visit to a nurse practitioner, a different one and she wanted me to have blood tests. Called again at the surgery asking to see a Doctor and was told to ring at 8am to see nurse practitioner. I demanded to see Dr and a doctor listening in saw me. I had by then the NHS leaflet on PMR. She agreed it maybe but didn't wNt to give me steroids in case. To cut a long story short, she got me an emergency referral to a Rhuemie in January 18. A 3 month wait. Seeing the Rhuemie, he asked me why the GP Hadn't prescribed steroids. So why are GPs afraid of making the decision themselves about steroids. After all if it is PMR a few hours will soon tell as in my case. I was able to be normal agai

Report the Doctor for malpractice. Do it today.

Rugger
Rugger in reply to paulst955

Hear hear!

zabzab12
zabzab12 in reply to paulst955

I would if i thought it would get me anywhere, it takes 3 days to get a phone consultation , and the doctors receptionists are worse than the doctors they are like bodyguards for the docs ,so they can see as few patients as possible, they ask about 20 questions about what you want to see doc about an then say ,you can have a phone consultation in 3 days, if its anything major they say go to A&E .

paulst955
paulst955 in reply to zabzab12

I meant to the GMC see here. gmc-uk.org/concerns/raise-a...

PMRpro
PMRproAmbassador in reply to zabzab12

Start with the practice manager, then go to the local CCG if you are in England:

england.nhs.uk/ccgs/

If all else fails - try the media. The government tells everyone the system is still seeing patients. That is NOT the impression some practices are creating.

I find this whole situation appalling especially as your husband has had this before, is basically being disbelieved and she is not willing to come to any agreement. I had a similar GP at my last practice- in relation to Consultant’s diagnosis of cranial GCA after a period of time she retorted “ now what are we calling this now?!!”

I think I’d be inclined to hit it from all angles; ask for a second opinion with another GP and make enquiries re a private appointment with Rheumatologist Failing an alternative GP who knows what he is talking about, a letter to the Practice Manager. Poor husband, he cannot continue to live with such pain unnecessarily. 💐

I would like to thank you all for reading my post and sending in your replys ,its so nice to have people who know exactly what your going on about , just to say my husband had blood tests but they came back normal so first doctor gave him naproxin , so asked for a second doctor , same doc surgery she offered co-codamol anyway happy to say husband got appointment on monday with a rheumatologist ,obviously had to go private ,but happy to do so , but really enjoyed all your comments , i wish you all well and speedy recoveries many many thanks karen

PMRpro
PMRproAmbassador in reply to zabzab12

Do hope the rheumy is some help - even that isn't certain sometimes.

zabzab12
zabzab12 in reply to PMRpro

will let you know ,but just having a bit of hope is something take care and thankyou

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