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?GCA, any advice appreciated

Posted , 10 users are following.

catherine46874
catherine46874

Hi, I don't know if anyone on here can offer some advice. I have had various joint and muscle pains, fatique and headache the last few months, the headache at the back of my head and neck getting worse, my ESR has come back at 118. My GP started me on 20mg Prednisolone whilst waiting to see a Rheumatologist but I became quite unwell after 5 days so she stopped it 3 days ago. My headache is getting worse, it's really painful when I lie down against a pillow, spreading round to my temples, bad tinnitus (not relieved by the medication I normally take) pounding pulse in my  head , worse at night,and feel generally ill.I suffer from occasional Atrial fibrillation, which has been worse the last few days also.My Drs appointment is not for another 6 weeks, not sure what to do.

2 likes, 7 replies

7 Replies

  • jean39702
    jean39702 catherine46874

    Posted

    I feel really unconfortable responding to this Catherine as I am not an expert.  However, your symptoms scare me.  I believe you are describing significant GCA symptoms and may need immediate medical attention.  You may have continued to feel unwell on 20 mg because the dose wasn't high enough to get the inflammation under control.

    I hope others with more experience respond. 

  • tina-uk_cwall
    tina-uk_cwall catherine46874

    Posted

    Hi Catherine, sorry to hear that you have not been well. You have not said if there was a huge improvement with all these symptoms when you were taking the prednisolone. If you do have PMR, currently this medication is really the only one that helps. In relation to your head pains, these symptoms do sound very worrying. My opinion is to get an earlier appointment Asap and get them sorted without delay. These symptoms sound very similar to GCA and that condition requires urgent assessment and medication. Do not waste any time. Do let us know how you get on. Regards, christina 
  • MrsO-UK_Surrey
    MrsO-UK_Surrey catherine46874

    Posted

    Catherine, take yourself off to A&E immediately and tell them all that you have told us.  With the symptoms you describe, especially the worsening headache you need urgent treatment and advice for both possible GCA (or any other serious condition) and the Atrial Fibrillation.  If you don't feel well enough to drive yourself, hopefully you have someone who can take you.   I wish you all the vry best and do come back and let us know how you get on.  
  • pat38625
    pat38625 catherine46874

    Posted

    Catherine please take advice from these good ladies.   I had undiagnosed GCA and I will never forget the pain on one side of my head, jaws sore when opening, the pain was becoming unbearable and my gp on 2 occasions wanted me to go to A&E but I refused because I felt so ill.  Someone from above must have been looking out for me  but I know now if those type of symptoms returned I would be off to A&E in a heartbeat.  Please go to A&E better to get checked out.  There are no scaremongerers on this forum, they know what they are talking about.  Please keep us informed and updated when you can.  Bless you.   Pat
  • jo42444
    jo42444 catherine46874

    Posted

    Better to be safe than really sorry. Both my GP an. Rheumy ask about these symtoms each visit. Even after 6 months. Their advice if I have any of the symtoms your describing is to go to the nearest emergency department. I have pmr. Be safe

    joanne

  • EileenH
    EileenH catherine46874

    Posted

    Your GP shouldn't have "waited for me to see a rheumatologist" - she should have called the hospital and sent you to A&E with a letter. ?GCA is a medical emergency and should be dealt with in the same way as a stroke or heart attack - by immediate referral to a specialist. 

    As someone has already asked - did the symptoms improve at all on pred? The dose she gave you is for PMR, the joint and muscle pain at least should have improved. It is nothing like enough for GCA, at least 40mg is the starting dose, often even higher, so the GCA symptoms won't have responed as well. 

    If you haven't already done so go immediately to A&E and tell them your story. 

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