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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

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  • noninoni
    noninoni beev

    Posted

    Hi you all, I am interest in this discussion too.  My sed rate yesterday was only down a little from  months ago - from 36 to 31, making my GP wonder if I really had PMR.  I do have a very sniffly cold.  Would that raise the sedrate?  My lymphocytes were down to 9% which seemed worrisome to me as well.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey noninoni

      Posted

      noninoni, yes your "very sniffly cold" could be having an effect on your ESR.  If you have the test repeated when you are feeling better then the blood test results should show an improvement.  If not, then you may not be on quite enough steroid to control the inflammation.
    • EileenH
      EileenH noninoni

      Posted

      Pred lowers lymphocytes to answer that first - that is why somepeople become more liable to catch infections. Which you have - and that is enough to raise your sed rate. And since 30 is about the normal top end of the range - it may be that YOUR normal is close to that. It is a very unreliable test, even as a monitor of response to therapy.

      I don't think it is a figure that is 100% reproducible,even on the same day. If you did one sample the first reading might have come out anything between, say, 34 and 38, the second 29 to 33. So the first MIGHT have been 38 and the second 29 - and he wouldn't have turned a hair. And the lab figures are only a guide - the symptoms are the main concern. Did you react dramatically to pred intially? That is the point where they get the best guide.

  • noninoni
    noninoni beev

    Posted

    Once again, THANK YOU THANK YOU for all your good work, Eileen and Mrs. O.!

    I am much reassured about the lab ESR and lymphocyte readings after looking at your replies.   

         Unusually, I was started on  5mg if you remember, and that helped, but it was only went they upped me to 7.5 that the pain went away.  I am now virtually pain free and back to exercising!   I was almost ready to quit the gym before since I could hardly move. 

       But the really good news yesterday was that I don't have heart failure, since some consultants (but not all) think I  have pulmonary hypertension (because of the bird breeders lung plbms) which can lead to heart failure.   That is really good news.  I may have a few years left after all.  smile

    • EileenH
      EileenH noninoni

      Posted

      Noninoni - heart failure isn't what a lot of people think and is not an automatic death sentence these days you know. Whereas it may have been in the past there is a great deal that can be done with monitoring and medication. I don't think you're ready for the off just yet if you are back to the gym!
  • beev
    beev

    Posted

    Hi Eileen, Mrs O

    I've been to the dentist and he was very thorough and did 2 xrays. He couldn't find anything. My CRP has come back as normal at 2.1.

    How normal is that CRP result and what are the implications??

    I have booked another blood test for in 2 weeks followed by a GP appointment a few days later.

    Beev

    • EileenH
      EileenH beev

      Posted

      "Reference Range

      Adult: less than 8 mg/L

      Most patients (90%) without organic disease have CRP levels less than 3mg/L and 99% have levels less than 10mg/L."

      So VERY normal. 

      Sorry - don't get what you mean by "What are the implications? Put it this way - there is a long way to go for it to be not normal.

      Did the dentist check your bite? By making you bite onto marking paper is the usual way.

      I still think the most likely answer is what I suggested at the start, tempromandibular joint disorder. I don't know if it can come and go - it does often resolve itself and the article says about half of patients never bother going to the doctor - 1 in 10 get a problem at some time in their lives. 1 in 20 go to a doctor.

      https://patient.info/health/temporomandibular-joint-disorders

      I think the best thing for you to do now, Beev, is stop worrying. You're a long while for this world I think!!!!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey beev

      Posted

      beev, as Eileen has said, your CRP is as normal as normal can be!  

      As for "implications", obviously that means there are none!  As far as GCA is concerned (your initial worry), it would be very rare to have a normal CRP. 

      If your initial pain that raised your query in the first place is still improving, and you are feeling generally well, then you can relax and just keep a watchful eye on it.....with any luck it will just disappear back to whence it came!  Certainly you need to do your part and stop worrying as any tension will not help.  Deep breaths!wink

  • beev
    beev

    Posted

    Mrs O and Eileen

    Thanks again. Yes I DO need to stop worrying  - it's my main problem!!!

    By implications - I meant does that CRP result suggest I am very unlikely to have GCA? You have answered that.

    No he did not do a bite test. I am occasionally feeling like some of my teeth on the left feel a bit sensitive and almost loose so I think you are probably right Dr Eileen!

    More wine must therefore be the answer -to relax me.

    I don't know what would be causing the ESR 27. Could TMD do that??

    We will see what it is in 2 weeks anyway.

    Thank-you both so much for all your help.

    Beev x

    • EileenH
      EileenH beev

      Posted

      A cold could do that - or it is normal!

      If he didn't do a bite test he can't tell if your bite is OK. My dentist checked every couple of years - don't go to one here but if I had I'd have had far fewer problems with neck and shoulders!!

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