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Help! Should I start high dose pred for GCA?

Posted , 6 users are following.

beev
beev

Hello all especially the usual helpful lot. I only seem to come on here when I need advice - sorry!

I have had jaw aching and painful to open wide for 2 days. Just on left side. No headache except I did wake up this morning with both eyes aching around the rims. No other symptoms.

I've just re-watched the Youtube of Prof Dasgupta talking about the symptoms and how one problem is patients themselves not referring themselves in time and how some people don't even recognise jaw pain as a red flag symptom.

The question is, should I get myself to A&E (which seems to me to be over the top ) and start 60mg Pred right away???

I keep thinking that it's probably something simple - but should I be taking action?? I don't want to go blind.

Do you always have systematic symptoms as well like fever?

Many thanks as usual

Beev

0 likes, 98 replies

98 Replies

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  • linda83143l
    linda83143l beev

    Posted

    You could ring the Healthline Number for advice or speak to A and E to see if they want you to attend.

    I think its NHS Direct the number you need xxx

    • beev
      beev linda83143l

      Posted

      Hi -Thanks Linda. However, I have no faith in such people to know enough about GCA to advise me properly. At a lecture I attended, Prof Dasgupta said that many GPs still think you have to have a headache to have GCA.
  • linda83143l
    linda83143l beev

    Posted

    Are you having your bloods tested for inflammation?

    Try and keep steroids as an emergency.

    That is a very high dose 60mg, you would have to wean yourself off very slowly. You must or you will have problems.

    • linda83143l
      linda83143l

      Posted

      Are you feeling ill with it?

      Do you think its happened due to the way you were sleeping?

      Do you have a temperature?

      Any pain other than the jaw?

      Xx

  • noninoni
    noninoni beev

    Posted

    I live in the states, and I would go straight to the hospital emergency room with those symptoms.  Why take the chance. You can go blind overnight.
  • beev
    beev

    Posted

    No other symptoms. Have had PMR for several years but my steroids are very low now - 2.5mg every 3rd day (can't take the 1mg as not coated). My latest ESR was 20, so borderline but that was a few weeks ago. x
  • beev
    beev

    Posted

    UK - Dorset. Would have to go to Yeovil hospital. I keep thinking I'm getting worried about nothing.
    • linda83143l
      linda83143l beev

      Posted

      If you are really worried go to the hospital, only you know how you feel and if it cant wait til Monday.

      If you cant get to hospital you could call a Dr out. (they are not all bad)

      Self diagnosis is dangerous. Xx

  • beev
    beev

    Posted

    Yes - I know. Think I will wait till morning. Here's hoping I won't regret it! I think I would have another symptom at least with GCA. I really don't want to go to A&E on a Sat night!! And don't want high dose Pred either.

    Thanks x

  • Mrs.Mac-Canada
    Mrs.Mac-Canada beev

    Posted

    Hi Beev,

    I have not had to deal with GCA but, from what I've read, I wouldn't mess around with my eye sight and would go to emergency and have it checked out. If it's nothing at least you'll have peace of mind.

    I had a black spot appear in my eye one evening and thought I'd wait andsee how it was in the morning. Well, I woke up with very blurred vision and, to make a long story short, was in the eye clinic having laser to repair a torn retina within 2 1/2 hrs of waking up. I was told if I had left it any longer I would likely have lost the sight in that eye.

    I'm sure Mrs. O and Eileen H will give you their thoughts as soon as they see your post.

    Best of luck to you,

    Diana

  • noninoni
    noninoni beev

    Posted

    my opthamologist told me only 2 days ago that pain somewhere near the temple area and jaw pain both pretty much clinch the diagnosis of GCA.  Don't take the prednisone on your own initiative however because you will need a prescription for a long time.  So  the only sensible thing is to get to emergency right away so you can get a real prescription.  If it turns out you don't have it, don't feel guilty about such a trip.  It is better to have it thoroughly checked out no matter what.
  • tina-uk_cwall
    tina-uk_cwall beev

    Posted

    Oh beev, what a worry. Does it hurt when you eat, do you have any tenderness on your head especially around your hairline. Even a mild headache especially around the temple area. GCA is such a worrying development that I fully understand your absolute concern. I suffer from cold sores and for about 2 days before the sore appears I can have terrible nerve pains all down one side of my face and I sometimes think if I should present myself to a&e because am I mistakenly confusing the cold sore pain with GCA, it's a predicament.

    i know you don't have much faith in nhs direct (it's changed its name and I think the new number is 111) but if you explain to the clinician that you are a sufferer of PMR and the symptoms are a worrying development of GCA if they are not familiar they are obliged to refer your concerns to someone else in the office and that someone else might give you a call back with advise on what to do next.

    sorry I can't be of any real help, and please let us know how this all pans out. Christina.

  • beev
    beev

    Posted

    No headache, just jaw aching slightly all the time and more when I yawn. Could be from teeth clenching when asleep?
    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Hello beev, I doubt this is GCA.  I know we can all be a little different with the symptoms we experience but your description of your "jaw aching slightly all the time" and more when you yawn certainly doesn't fit with my experience connected with my jaw.  The only jaw pain I experienced prior to diagnosis was on chewing, never when my jaw was still

      However, the one symptom you mention of waking this morning with pain around the rims of your eyes would probably have had me taking myself straight to A&E, or at least to an optician to ask him to check the back of my eyes - maybe unnecessarily, but I would prefer to do that than risk my eyesight.  Has your eye pain resolved during the day?

      Beev, if it was me and the eye pain returns, I would go straight to A&E.  I know it isn't what you want, along with the possibility of increasing the steroids, but far better to be sure than sorry.  Good luck. 

    • beev
      beev MrsO-UK_Surrey

      Posted

      Thanks Mrs O. The eye pain resolved after a few minutes this morning. Can opticians see the changes involved in GCA?

      As you say, if in doubt tomorrow I will go to A&E and if really worried will take 40mg Pred first.

      The thing is with me I often get weird aches and pains and I tend to tell myelf it will go away. I would end up being known as a hypochondriac otherwise!

      But you cannot mess with your eyesight. I remember prof Dasgupta said, in a talk I went to in Taunton, that the jaw pain was when you talk as well as when you eat.

      Beev

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Beev, yes a good optician (better still an ophthalmologist) can examine the back of your eyes for any slight paleness or swelling of the optic disc.  My ophthalmologist described it as seeing  a sort of halo effect. Although post-GCA, I still see him 6-monthly for glaucoma and during my latest examination he remarked that there was no sign of GCA (the best ever news no matter how many times I hear it!)

      Well jaw pain in GCA when talking is a new one on me but, as I said in my previous reply, we can all be slightly different in the way we present with our symptoms - for instance some GCA sufferers can have ear pain as a symptom.

      I hope you will wake in the morning to no pain whatsoever - do please come back and put our minds at rest too!

    • linda83143l
      linda83143l beev

      Posted

      Any dose of pred you would have to wean yourself off slowly. Reducing 5mg every 10 days maybe or a month. Dr advised me this xx

    • linda83143l
      linda83143l

      Posted

      Check with your Dr for reduction as it does affect your body. Xx
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