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I have had PMR since 2013 Doctor refuses to discuss GCA

Posted , 10 users are following.

christine_fay
christine_fay

Today I went to see my GP because although I am managing my PMR symtoms reasonably well I have had the most appalling headache, jaw pain when eating and general pain i my head, scalp ear and back of the neck. I have dizzy spells and worsening tinnitus. I cannot wear my glasses for more than a few moments because of pain I cannot wear my hearing aids for the same reason.

I also had a UTI due to the fact that I have to use catheters and that occasionaly happens.

After sorting the UTI. We discussed the headaches.... Doc said I should not be on such a high dose of Prednisolone 18mg at present and slow reducing as advised by Eileen on this forum. He prescribed alendroic acid again saying I had osteoporosis. I told him I do NOT and he checked back at my test results which showed I had mild osteopenia which was fairly common given my age of 72. No treatment was recommended on that test.

Trying to bring the subject back to headaches Doc told me to go and have my eyes tested ! he also told me to wear my hearing aids to stop the tinnitus. He prescribed a high dose of co-codamol to control the headaches. He avoided any mention of GCA even though back in 2013 that was the immediate diagnosis of my problem with PMR as well.... They gave me 30mg Prednisolone for that which certainly fixed the PMR and the headaches...which were nowhere near as bad as now.

I went tosee the Doc just after Christmas after suffering the headache for 3 weeks after a horrid bout of flue lasting 5 weeks. Was told the tinnitus was age related and because I am partially deaf... my brain was acting up!! the headache was likely to be from sinus after the flue..... I do not have sinusitis or anything like it. I also asked if I could have coated Prednisolone because I was getting a sore tum with the uncoated, I was told to take Omneprazol again which I had stopped due to very bad palpitations and other nasty side effects which stopped immediately I ceased the omneprazol. He refused the coated tablets. I asked for my updated prescription... left the surgery and went to place the order at the desk... Doc had forgotten to put any Prednisolone on the prescription. I had to wait for him to re-do it... when he sent it back he had reduced my daily dose from 18mg to 6mg now that is a drop I have no intention of making. I know the advice will be to change doctors, however it is not possible for me in this area. Any other thoughts on how I can get some sort of advice/help in this case?

2 likes, 24 replies

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  • constance.de
    constance.de christine_fay

    Posted

    I imagine you look like the photo you have on this site!!!!

    Can't believe what some people have to put up with, the doctors I mean (well of, course, the PMR and pred doses as well).

    I can't give you any advice - we have the experts to do that, but keep your pecker up.

    Kindest regards, Constance.

    • christine_fay
      christine_fay constance.de

      Posted

      yes the picture was chosen to represent my anger at the treatment and the determination that I am gonna bite it in the butt somehow
  • MrsO-UK_Surrey
    MrsO-UK_Surrey christine_fay

    Posted

    With those symptoms, and already suffering from PMR, if it was me I would be hot-footing it to A&E.  If your GP surgery is the only one in your area, surely it has more than one doctor?  If so, switch to another GP immediately.  If you don't go straight to A&E, at the very least go to a good ophthalmologist or optician and get them to examine the back of your eyes for any sign of GCA.  But if you experience any sudden problem with your vision, only an immediate visit to A&E is best advice.
  • Jersey_Royal
    Jersey_Royal christine_fay

    Posted

    I think you definitely need to change your Dr.  

    Youe symptoms sound similar to mine at the start , very bad jaw ach, couldn't really chew, headaches, aches and pains all over, and eyesight starting to fail.

    my Dr did a blood test, and rang me immediately, to go straight to the surgery, and started me on 60mgs of pred.

    you should get a second opinion.

    JR

    • christine_fay
      christine_fay Jersey_Royal

      Posted

      The nearest doctor's surgery is 6 miles away and they will not take a remote patient who has a nearer surgery. There are 3 Doctors at this surgery but you cannot change between them they specialize in different things and have their own set of patients. At my age any 'rocking the boat' could get me removed from the list...that's what the receptionist told me! Then I would be stuck because the surgeries farther away will not accept us.  I am wondering if saving up for a private docs opinnion might help but money is very tight for us.
    • EileenH
      EileenH christine_fay

      Posted

      https://patient.info/forums/discuss/gca-387589

      in case you haven't seen this Christine this is from a "neighbour" in Oxfordshire who started a new thread to send you a message.

      By the way - that is a threat from the receptionist that I don't think she has any right to say or anything of the sort. I would report it to the local PCP authority (whoever they are now since I know it changed).

      I searched "how to make a complaint about my gp practice" and got online info from Which that sent me to NHSEngland, which you find directly at "england dot nhs dot uk fwd slash contact-us forward slash complaint"

      But the quickest and probably easiest route would be A&E - just take a good book...

  • EileenH
    EileenH christine_fay

    Posted

    About the only other option you have to go privately to a PMR/GCA expert - who will make a rather more informed assessment and then tell the GP if he disagrees. 

    You're in the Oxford area aren't you? Is the Chertsey area an option for a private consultation, bearing in mind you shouldn't need more than a couple of appointments and the doctor I'm thinking of does both private (so you can get to see him) and NHS so if he thinks you need a consultant he would possibly put you onto his list. The other option would be to go to John Radcliffe A&E and explain your problem and fears. What you describe is consistent with GCA - there is no question of that fact although no-one could diagnose it remotely and none of us have medical qualifications to practise medicine. My husband (who is a clinical scientist) has just said "she needs a different doctor".

    To insist on an "overnight" reduction from 18mg to 6mg suggests your GP hasn't a clue and he most certainly isn't listening to what you are saying. My paramedic daughter says she'd take you to hospital.

    • christine_fay
      christine_fay EileenH

      Posted

      Yes I am in Oxfordshire and already attend John Radcliffe for another problem. The surgeon I see there says there is a support group in JR for PMR but my doc denies this. I think I will go to A+E as although the co-codamol seem to be relieving the sharp pain a bit I know it is not addressing the underlying inflamation which I can feel very strongly.

      I do have a problem as I am the primary carer for a very disabled husband with PPMS he cannot do anything to help me or drive me anywhere. He needs attention every few hours and this is one of the other reasons for not wanting to 'rock the boat' I will be seeing the opthalmologist re the eyes but surely he should have referred me to the one at John Radcliffe?

    • EileenH
      EileenH christine_fay

      Posted

      I do very much appreciate your reasons for not "rocking the boat". However - let me be brutally realistic for a moment: IF this is GCA you are running a risk of going blind and if you have visual loss YOU won't be able to care for your husband at all will you? Your GP cannot tell what is causing the symptoms without some fairly hefty testing - your symptoms are, as I've already said, consistent with vasculitis of some sort affecting the cranial arteries. You may not have visual symptoms at present, it all depends on which arteries are affected, but it can affect hearing and your brain causing dementia-like problems as well as worsening what you already have. GCA can also cause stroke.

      Now it may NOT be GCA - but it is something that very much resembles GCA and that needs a differntial diagnosis which few GPs are capable of and they are there to send you to a specialist who IS capable of doing so. Your GP is playing with fire and you need the firebrigade - and you will find them at JR. They may also say it isn't GCA - but they then have to identify something it could be instead. It may also be that there is nothing to be done - but if it is GCA there is something that works and your GP is willfully not only denying you correct care he is also denying you the medication that works. His denial of a support group existing merely means he doesn't know and doesn't care. I would be surprised if it were at JR - but it may well be. 

      Please go to A&E as soon as you can arrange some care for your husband - because otherwise it may not be long before you have to find carers for both of you. And be totally up-front with the doctors at A&E as to why you are there.

      As an aside - try Zantac (ranitidine) instead of the man's favoured PPIs. It does the same job near enough with fewer side-effects, it works on a different mechanism.

  • pam33879
    pam33879 christine_fay

    Posted

    Hi I'm so sorry you are having such a dreadful time with your GP.  I am registered with a GP who is out of my area, the rules have recently changed so it is now possible to choose a GP based on quality rather than location, (I'm assuming you are in the UK).

    In the meantime it may be better to take a trip to A&E to get some proper treatment.  I hope things improve for you.

    Best wishes

    Pam

  • Mrs.Mac-Canada
    Mrs.Mac-Canada christine_fay

    Posted

    Hi Christine Fay,

    So sorry you have found yourself in this awful situation.  I agree totally with the other ladies and especially Eileen's approach to this.  Your eyesight is just too valuable to be in the hands of an incompetent GP.  

    Do whatever it takes to get a proper diagnosis of what is causing your symptoms. It may save you from much more serious problems and, at the very least, you will have some peace of mind.  

    It is time to ask for help with you husband from your friends and/or family. Some of us don't like to do that but sometimes it is really necessary.

    Best wishes in getting the proper  care you're entitled to very, very soon.

    Hugs, Diana🌸

  • jean05221
    jean05221 christine_fay

    Posted

    Christine

    Please ask someone to take you to your nearest A&E. You need attention now.

    All the very best. ...thinking about you.Jean

  • misdiagnose
    misdiagnose christine_fay

    Posted

    Scandalous! My GP was ruthless in reducing my prednisolone and I lost some eye sight and I think have also damaged my temple arteries (hopefully not my heart, though I do have heart pain and went from having low toi very high blood pressure). I even thought of buying prednisolone online in order to protect myself from an increased risk of stroke (which is high already) and dementia. I've signed a Living Will because I need to prepare myself for the worst.

    Everyone should have a DEXA scan, cholesterol and glucose tests, blood pressure on all 4 limbs and temple artery as routine.

    This type of 'radical reduction' of Prednisolone is very short sighted because in the long term, damaged arteries carry a high risk of very serious disability and doctors shouls realise this is a massive cost to the NHS. Far better keep people well as possible.

  • FlipDover_Aust
    FlipDover_Aust christine_fay

    Posted

    When I read this sort of thing I thank my lucky stars I live in Australia where we are free to go to whomever we like, whenever we like.

    We also have government assistance with care, transport and financial support.

    I really feel for all of you living in the UK - sounds terrible!

    • EileenH
      EileenH FlipDover_Aust

      Posted

      Other contributors from Oz have said other things - like having no simple access to a specialist as they live in the sticks and obstructive GPs who are also up to an hour or so away from their home. In the UK in the urban areas it does tend to be better and you have more choice in who your GP is and which hospital you are referred to. But it is variable in any country.
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      you are right - I live in a very well serviced and wonderful city and I see the world through rose coloured glasses.

      If you live in the bush you are stuffed.

    • EileenH
      EileenH FlipDover_Aust

      Posted

      Have you said - where are you? I liked Brisbane, loved Sydney and should have done more in Melbourne - I didn't get the hang of it really but we only had a day (and PMR ;-)  )  I'm a country girl and did love all the bits in between - we drove down the coast from Brisbane to Melbourne with a bit of a detour into inland towards the end heading to Melbourne. The Blue Mountains were fantastic too. And I'd do the drive from Uluru to Alice Springs via Kings Canyon again any time.
    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      I'm in Canberra - the nation's capital! bet you've hardly heard of it though!

      The best bits are NOT Sydney, Melbourne or Brisbane! Mind you, I hate all three of them so I could be slightly biased. lol

    • EileenH
      EileenH FlipDover_Aust

      Posted

      Ah but I have heard of it and would have loved to visit but it was a bit out of our way on the road trip and we had to be in Brisbane for the meeting that was the reason f for coming all that way! It was the bits in between that were best - and the Barrier Reef which was the last thing we did before flying home. In those days my husband still worked and we couldn't stay longer. The chances of there being another Oz meeting are small. Trying to get a daughter to consider coming over to work - one's a nurse, the other a paramedic - and then OH wouldn't argue about coming to visit at all our own cost!!
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