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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

24 Replies

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  • misdiagnose
    misdiagnose christine_fay

    Posted

    Hi Christine, there is a lot of information online about the seriousness of this illness. Print out one for the papers which explains the problems and give this to your doctor.

    Having your eyes tested is an excellent idea. This will show if you have a deterioaration in your eyesight. Hearing tests are also useful for this reason.

    Ask the optician to send the reports to your doctor.

    Co codamol does not help to reduce inflammation or protect against a blood clot as well as asprin which many GCA specialists suggest.

     

    • christine_fay
      christine_fay misdiagnose

      Posted

      Co- Codamol just makes me feel sick and dizzy....not something I could take in the daytime. I am on an ant-inflamatory diet seriously now and it does help. I believe I had a big flare during the last 'big moon' event as the same thing happened twice last year at the same 'big moon' cycles.Eye tests etc are booked...have got someone on standby to get me to A+E if there is any change/deterioration of my symptoms. I am ok right now not too painful and not like yesterday but still find wearing my glasses unbearable.I called for some advice and was told I would need more than pain to get attention at A+E but that has not put me off...
  • christine_fay
    christine_fay

    Posted

    Had my eye test today... very thorough. Opthalmologist has sent a letter to my doc asking for a full blood test to check the headaches and temple tenderness. I also have a cataract in my right eye so have been put forward for an op for that... hope it comes before I am blind and senile! I do not have and will unlikely have any problem with macula degeneration....Nice when someone takes notice of symptoms and is on your side...
    • misdiagnose
      misdiagnose christine_fay

      Posted

      That's progress Christine. My dentist wrote to my GP and that got things moving.
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