I have had PMR since 2013 Doctor refuses to discuss GCA
Posted , 10 users are following.
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
constance.de christine_fay
Posted
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 constance.de
Posted
MrsO-UK_Surrey christine_fay
Posted
Jersey_Royal christine_fay
Posted
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 Jersey_Royal
Posted
EileenH christine_fay
Posted
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 christine_fay
Posted
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 EileenH
Posted
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 christine_fay
Posted
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 christine_fay
Posted
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 christine_fay
Posted
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🌸
liz12234 christine_fay
Posted
Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
jean05221 christine_fay
Posted
Please ask someone to take you to your nearest A&E. You need attention now.
All the very best. ...thinking about you.Jean
misdiagnose christine_fay
Posted
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 christine_fay
Posted
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 FlipDover_Aust
Posted
FlipDover_Aust EileenH
Posted
If you live in the bush you are stuffed.
EileenH FlipDover_Aust
Posted
FlipDover_Aust EileenH
Posted
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 FlipDover_Aust
Posted