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I’ve been diagnosed with GCA age 41 but no follow up. I’m really confused :(

Posted , 15 users are following.

Lotus76
Lotus76

Hi Everyone, I’m hoping someone can help. I was diagnosed with GCA on 27.12.17 after going to the GP with what I thought was sinusitis.

I had been feeling rough for a while beforehand and looking back think it all fits together - knee and hip pain, and back pain ( stiff in the morning and after sitting),  and pain in my upper back between my shoulders. I know it sounds silly but I just thought it was aches and pains from doing too much - I work about 50+ hours a week as a teacher and have 3 kids at home too.

Anyway, the doctor sent me for a blood test and when the inflammatory markers came back high (33?) he said it was Temporal Arteritis. He started me on 20mg  Prednisolone but said I wouldn’t need any more follow up and that was it. Well, I had never heard of it- so I started to look into what it is and came across information about polymyalgia. I was also worrying that i wasn’t going to be seen again - so I went back to the GP. I saw a different GP and she said she didn’t think I had GCA but in the absence of any other diagnosis and the fact that I had responded quickly to the pred she upped the dose of the pred as she said the initial dose wasn’t high enough. She asked me to have a repeat blood test a week later and then go back. I did this and was telephoned by the original GP I had seen. He was Adamant his diagnosis was accurate - but said that as my inflammation level was now ‘normal’ I should reduce the dose of pred. He told me to reduce 5mg every 3 days. 

I started doing this and straightaway realised that this was going to make me feel ill- so instead have been reducing by 2.5 every 2. 

Anyway, I am now down to 7mg pred and I can feel my facial pain symptoms returning. I have really lost confidence in the GP’s - I am not sure what to ask for,  whether to push for a specialist referral !? Whether it is possible for me to even have GCA and / or polymyalgia? Or whether there is another condition they should be considering? I am also not sure what they ‘should’ be doing if they genuinely think I have GCA. I’m sorry for the really long post but I would be enormously grateful for any advice or support -

Thanks biggrin 

2 likes, 20 replies

20 Replies

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  • BettyE
    BettyE Lotus76

    Posted

    I think if I had been treated like you I would have gone back to the GP who is so sure his diagnosis was correct and tell him that you have researched GCA and you are really frightened by the possible threat to your sight.  This might just give him pause for thought; he has his career to consider!   20mgs is nowhere near adequate for GCA and if he thinks it is then he needs to do some serious reading. Nor is his reduction plan ( if you can  call it that ) like anything I have ever come across on here. 

    If your aches persist then I think I'd go to A+E where you'd have a better chance of seeing someone who knows what s/he is talking about.

    I don't want to go OTT but you have not been well advised

     

  • Lotus76
    Lotus76

    Posted

    Just an update - saw a lovely GP this morning who listened to all of my concerns and he made an urgent referral to rhematology for me. Thanks for everyone’s advice and support - it gave me the confidence to go back again. 

    smile 

    • mary19068
      mary19068 Lotus76

      Posted

      Hi Lotus76

      That's great news!...hope all goes well for you...

    • margot34956
      margot34956 Lotus76

      Posted

      I am so glad you saw a lovely GP. Awesome for them to listen.

      All the best!

    • Rimmy
      Rimmy Lotus76

      Posted

      Good for you - but in fact ALL doctors should be this receptive and we shouldn't have to be so grateful when they listen and act in a reasonable and professional fashion - but until that great day (if ever it) arrives I am pleased for you Lotus76

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