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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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  • beev
    beev

    Posted

    Linda, I suspect I might grind my teeth - I often find myself clenching them. Am a bit of a stressy person!! Thanks also to Noninoni.

    Beev

    • erika59785
      erika59785 beev

      Posted

      I had jarpain on one side a couple of times this year, but no headache.  At that time I did not know about GCA and I was not yet diagnosed with PMR.  It just went away on its own within 2 days.
    • erika59785
      erika59785 beev

      Posted

      Sorry about misspelling  "jaw"  instead of jar.....I am still learning some the English vocabulary. :-)

      Hope, all will be well soon and there will be no more fears of GCA!  It would be a dreadful problem indeed.

  • linda83143l
    linda83143l beev

    Posted

    Hi.

    One night I was in horrendous pain. My jaw was really killing me, I had to ring the emergency dentist.

    I was living in Manchester at the time. O had to go to Moss Side, terrified me.

    I had to have a nerve removed, lo it turned out to be the size of a full stop but the pain.

    I forgot about that, this is also a possibility.

    Xxx

  • beev
    beev

    Posted

    Hi all

    I have been feeling quite a lot better today so did not get an appointment with my dentist as I had planned. Will see how I am tomorrow before cancelling the GP appointment. Thank-you all for yet another occasion where you have come to my rescue! I would buy you all a drink but can't get it through the computer without damaging it. xx

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Well good news to hear that you're so much better...but it doesn't answer the question as to the cause of your pain over the last few days.  Perhaps you have been suffering some stress of late?
    • beev
      beev MrsO-UK_Surrey

      Posted

      Well, so many things I get are never explained. Maybe it's stress but I don't think so this time. I even wonder if I knocked my face on Barneys very hard head and then forgot about it. Or I've been clenching my teeth a lot.

      i have booked to have my esr done again on Thursday because I want to keep an eye on it now. Will keep you posted!

      Beev

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Your words about Barney have stirred up memories for me.  Years ago, when bending down to put some rubbish in the bin under the sink, our first goldie suddenly decided to jump up hitting me really hard on the nose and sending me backwards.  The worst nose bleed ever followed, but the pain was unbelievable.  It was Boxing Day, and hubby and son thought it was hillarious when I said I thought I'd broken it,  Over the next couple of days, I looked like Rudolph (well it was Christmas!) and decided to ask the GP at a routine visit if I could have broken my nose.  She commented that it looked crooked and sent me for X-ray.  I didn't get the results for ages, by which time the break was healing.  A work colleague said he had once stood in on surgery to straighten a broken nose, described the procedure....I've lived with a crooked nose ever since!

      Whilst getting your ESR done, why not ask for a CRP as well.  It can be the most reliable of the two, especially where GCA is concerned......although always remember that both can rise for a myriad of other reasons including a common virus/infection.  

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      I've just had a ppost from another lady with similar pains to you who went to her dentist who said her bite was wrong at the back and filed down the offending teeth. The pain is now almost gone.

      Don't cancel appointments, go and get it checked and if they find a reason you won't have a scare and a Sunday afternoon in hospital again. 

  • beev
    beev

    Posted

    Hi Mrs O and Eileen

    I have cancelled the appointment to my GP now and never got around to making the dentist one. My experience id that it's better to stay away from all these people as much as possible. However, I do have a blood test booked for Thursday and will ask about having CRP done too, Mrs O. I am keeping an eye on it now and if there are any symptoms left in a week or so will go to dentist probably.

    I sympathise about the nose, Mrs O! They have very hard heads, these retrievers! A few weeks ago, he did bash me on the mouth/teeth. Wonder if that could be the cause but it's too long ago I think.

    All the best

    Beev

  • beev
    beev

    Posted

    Hi Mrs O, Eileen et al

    I had my blood taken again today, ESR and CRP. Just received call from surgery to say we might have to tweak my dose. I rang him back and ESR is still 27 as in hospital on Sunday. I currently have no symptoms of PMR or GCA. I explained it all to doc and he agreed to keep Pred the same for now and watch the symptoms. He said to have another test done in 2 weeks before Xmas.

    How does ESR work? Did I not give it time to reduce? At least it's not still going up.

    What do you think? I shouldn't be putting dose up just because of ESR should I? CRP wasn't back yet.

    Beev

     

    • EileenH
      EileenH beev

      Posted

      The blood values tend to lag behind anything, whether they are going up or down. It isn't accurate or reproducible to the odd few points and I think it would be far more sensible to indulge in masterly but watchful inactivity. Pred dose should never be done in response to isolated blood results - the symptoms are king. I had one odd high CRP - the following week it was back to normal. 
    • beev
      beev EileenH

      Posted

      Eileen, yes I agree and crp isn't back yet. Am I right in thinking that changes faster than esr? Btw, I've never had crp done before. Did it because Mrs O suggested it. What is normal crp level?

      I am still getting occasional ache but lower, wonder about a tooth. Will go to dentist and get it looked at.

      Beev

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Beev, normal CRP is considered to be within the range of 0-4.  I found that my ESR levels always improved faster than my CRP.  In my case, my blood test results always mirrored my symptoms, and both I and my rheumy were glad to have them as a guide. 
    • beev
      beev MrsO-UK_Surrey

      Posted

      Mrs. O, presumably anything that has been causing my aching would be causing a raised esr,wouldn't it? Even if I'm grinding my teeth at night, that would cause inflammation which would make esr rise a little?

      Beev

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      Not "anything", beev.  Yes infections/viruses and other conditions can cause raised inflammatory markers, but no I can't see how grinding teeth at night would cause a raised ESR!  You are only going to get an answer to this if you pursue the suggestions we offered in our earlier posts rather than cancelling the appointments and sitting there worrying.

       

    • EileenH
      EileenH beev

      Posted

      Beev - as MrsO says, stop avoiding the issue. If you have a problem, then you need to see the dentist and the doctor to discuss it if the dentist can't identify anything. No, I don't think grinding your teeth would cause the sort of inflammation that raises ESR but I can't go into the physiology here! CRP is thought to generally rise more quickly than ESR but it isn't always an indicator either - these are things that aren't written in stone. Medicine isn't like that.

      And by the way - Bristol also has TAUS (temporal artery ultrasound) so you don't need to panic about driving to Southend to get it.

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