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GCA following PMR diagnoses-symptoms

Posted , 12 users are following.

audrey80537
audrey80537

i have been recently diagnosed with PMR and for the past couple of  weeks I  have been having sporatic mild headaches mostly on one side of my head.  Two rheumatologists were not overly concerned and the latest referred me to a neurologist for further evaluation however he  will be watching it closely.  

For those of you with GCA what were your first symptoms?

thanks.

Audrey

0 likes, 8 replies

8 Replies

  • Guest
    Guest audrey80537

    Posted

    Hi, Audrey. I am GCA only. Here are my symptoms in order: pain in neck with a knot at the base of my neck, could not open jaw for doc to examine throat (claudication) , slight headache in back of head slowly moving up to cover entire head, and finally the worst headache possible with pounding on right temple. Had positive temporal artery biopsy two weeks after sed rate of 95 in ER. It took 60 mgs of pred to start reducing the inflammation. Now down to 30. I do not have PMR, only GCA. Hope this helps a little and best of luck. Whoops, I also had a fever when I first went to the ER...did not know I had a fever. I lost weight the first two weeks. Ann11195
  • MrsO-UK_Surrey
    MrsO-UK_Surrey audrey80537

    Posted

    Audrey, I can tell you my first symptoms with GCA but do remember that everyone can be a little different in both how they present with their symptoms and how they react to the steroid treatment.

    The very first rather strange symptom and not something I've heard anyone else mention was being unable to talk without continuously biting the inside of my cheeks.  I sought the advice of a dentist who remarked on the resultant ulceration inside the cheeks but couldn't find any problems in my mouth that suggested a cause.

    The next symptom was head pain and increasing very high blood pressure in spite of medication.  The all over head pain developed into the most hellish continuous pain leaving me unable to put my head on the pillow.  Over the course of the next few weeks before diagnosis, nausea, vomiting, blurred vision, dramatic weight loss and jaw pain on chewing all joined in the fun.  Both my ESR and CRP blood test markers were very high.

    During the previous year I had been ill with then undiagnosed PMR.  Although I appeared to have made a complete recovery in just under the year, all the body pain of that year returned with a vengeance alongside the GCA symptoms and eventually both were diagnosed.  It is highly possible that GCA arrived through the back door because of untreated PMR inflammation left to course through my body the previous year.

    Your headaches may or may not be caused by GCA - they could simply be a side effect of the steroids.  We have come across people in the past who have felt they may have GCA but it has turned out to be due to various other causes, including neuralgia.  It is very reassuring that your rheumatologist has referred you to a neurologist just to rule out any specific nerve pain - it sounds as though he is being thorough and you can't wish for any more than that.  Meanwhile, due to you having PMR and being on steroids, you know to remain alert to any problems with your vision and the need to seek urgent advice.  Some very unlucky people never having heard of PMR are not aware that their new headache etc might need immediate treatment and are left at more of a risk of losing their eyesight as a result.   

     

  • elizabeth20640
    elizabeth20640 audrey80537

    Posted

    Hi Audrey I had PMR first and was on 20mg pred I started off with pain in neck, flu like symptoms then pain in my thighs and couldn't walk, it was only when I reduced down to 12.5 mg pred I first noticed the jaw claudication when eating, and noticed the arteries at side of head very visible and then pain on side of temples,

    I was admitted to hospital had a biopsy which was positive, pred was increased to 60mg and was released after 4 days. And CRP was down to 13

    But next day I had violent headaches, I went back to hospital but they gave me pain killers, they were reluctant to increase dose but pain killers were not doing a lot.

    I couldn't put my head on pillow,

    After a week the sight went in right eye for 15 mins a very scary time. And had 2 more

    Episodes

    I went back to hospital they increased my dose to 80mg and headaches stopped and I had a eye exam so the consultant said it was a temporary eye loss,

    This all started in January I'm down to 20mg hope this is some help,just act quickly the loss of sight is so frightening

  • pelham29972
    pelham29972 audrey80537

    Posted

    For me, PMR was diagnosed four weeks ago by doctor who treats my rheumatoid arthritis.  I was just then, when the PMR pains on my hips and shoulders came on, starting to have intermittent right side pain behind my eye.  Because my SED rate had been checked to be low (taking methotrexate and Plaquenil for RA), they put me on low dose pred and said to see if it also helped with the GCA symptoms which, at the time, were not too bad. Headache getting a bit more frequent and now have the jaw issue on the same side.  I just take ibuprofen as I have another checkup scheduled with the rheumatologist next week and also a follow-up check with the opthalmologist.  I have a recurrent floater in the same spot in my right eye, so we are keeping good watch on it with a follow-up blood test and eye exam. All scheduled to happen right away, so I am not too worried.  Pred is working fine for body pains and ibuprofen helps with all the pains, including head.

  • Susanne_M_UK
    Susanne_M_UK audrey80537

    Posted

    Audrey

    I started with flu like symptoms, was in bed feeling generally unwell, and even when I went back to work after a short while, I always felt under the weather. I then had pain and sensitivity on one side of my head, painful ear on the same side, pain behind my eyes, sore and tired eyes.

    All the symptoms were ignored by my then GP, even though I already had PMR! Yes, beggars belief. I'm now with a different surgery. A blood test finally convinced her when my ESR was around 130 and CRP above 100.

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