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Is this early GCA?

Posted , 9 users are following.

karenjaninaz
karenjaninaz

The last 3 days I have painful chewing on right side which radiates to my right temple. Otherwise I feel really well on 14 pred working down to 13.5 snail pace.

I just called my rheumatologist who reviewed my blood work and said there was no indication of GCA.

I add I have been taking hctz - started 12.5 then 25 when that didn't work-for BP . However I got too weak and dizzy so my primary doc will change me to Ca channel blocker tomorrow.

I wonder if it's from my teeth because, while taking aa my teeth "moved" and I kept going to the dentist to adjust my bite. I only took 3 doses aa then stopped and my teeth seemed to move back to their proper sockets.

I am so terrified of GCA that every single twitch gets me going. I am due to see the rheum in 2 weeks.

0 likes, 20 replies

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  • iellen32
    iellen32 karenjaninaz

    Posted

    Hi Karenjaninaz , sorry to know you are going through the painful symptoms and the discomfort they bring.

    Hope soon you will get all solved.

    Talking about worries and fears I got to know they do not help, just the opposite as the way we think, the way more likely it will be.

    I have GCA there are three years, yes, on Pred, no salt, no sweets , no glycemic carbs, cooking from starch, exercising ... You name it!

    In one word: I keep following the book....and still alive😊

    Stay well.

    • iellen32
      iellen32

      Posted

      I have GCA there are three years.

      As I already said my life evolves around my symptoms. Since I open my eyes in the morning till the end of the day and the hours in between I keep observing my vision.

      I do not have those pains as I had during the first year of my Temporal Arteritis, when chewing, or those in the neck.

      If I suspect something is different I immediately make an app to see the ophthalmologist, or the optometrist.

      I am vigilant, I will do my part, I do not care if it looks, or if it sounds exaggerated.

      Without worries, or fears, I am firm though avoiding the loss of my vision.

      This has to be added to my prior reply.

      A positive outcome is my wish to all.

  • Anhaga
    Anhaga karenjaninaz

    Posted

    If you detect any changes in your vision, get thee to an Emergency department pronto!  Otherwise it seems probably a result of the dental issues you've had.  Teeth seem to have nerves that like to manifest their pain in a "referred" place. How long ago were you taking AA?
    • karenjaninaz
      karenjaninaz Anhaga

      Posted

      I took only 3 weekly doses the last 2 weeks in Jan and first week of February. I will visit my dentist Monday. As soon as I took the aa I felt it in my teeth.
  • EileenH
    EileenH karenjaninaz

    Posted

    Not wishing to blatantly disagree with a rheumy, but the blood work may not show anything - there tends to be a lag in many people between symptoms and raised bloods, especially when a patient is on pred, even at a moderate dose.

    It could be anything, it is very vague. However, as Anhaga so rightly says, any worsening of symptoms or any visual problems of any sort - get thee to a doctor, asap! And if the jaw pain continues as during chewing and going away when you stop, be assertive! 

    Many doctors are confident that a dose of about 15mg will actually deal with most GCA - the very high doses are used to avert risk to vision or if it is very bad. That suggests that at the dose you are at much will be managed - so watch for it getting worse or anything eye-related. And stop panicking - I know, it is easy for me to say! wink

    • lodgerUK_NE
      lodgerUK_NE karenjaninaz

      Posted

      Stop tapering till it is sorted out or the pain ceases.

      Take no chances and no prisoners and watch those eyes like a hawk.

  • Jersey_Royal
    Jersey_Royal karenjaninaz

    Posted

    I feel exactly the same, I had GCA diagnosed on November 2012

    I am down rob1 pred a day, and gave been for 3 months, just so scared to give up, because I have quite a long spell of feeling great, but I have had

    a couple of evenings this week where my jaw had this feeling in it, not pain in chewing but I think a sort of neuralgia in the jaw & gums, but I panc. But ok at the moment.  I did have one day when I'd heard some stressing news that I started real strong aches & pains, legs light weights, back ache , just aching pretty much all over.  But then a couple of days and back to fine.

    I stuck on 1 pred.  I want to sto pred (I am on holiday at the moment) for another 10 days, better stay on it I suppose.  Although I could try taking half a pred?????

    not sure, but been on red now for long time....

    Jan .

    • EileenH
      EileenH Jersey_Royal

      Posted

      Don't just drop from 1 to zero - either do half or alternate days no pred, even better start with half and then alternate days. You'll feel better for it.

      I've been on pred for over well 6 years. No sign of getting off either...

  • snapperblue
    snapperblue karenjaninaz

    Posted

    Do ask your primary about this.  As far as I know, the first visual symptom is likely to be loss of vision in half or the whole visual field in one eye.  That requires immediate action if the vision is to be restored.  I'd ask for a note from the doctor to present at the ER to hurry things along, in case anything happened. I assume you are watching for the other signs.

    I am not a fan of your rheumatologist, based only on his dismissal of these symptoms because of the blood tests.  As Eileen often tells us, they are not a reliable indication of what is happening.  Signs and symptoms are better in PMR.  In GCA, it is hard to get a firm diagnosis- there are no infallible tests- so great attention should be paid to the key signs. (I don't like that "radiating to the right temple," though I know nothing about pain in chewing  that is related to tooth movement.)

    Around me, no one has to be embarrassed for being terrified or panicky about GCA- it is a truly terrifying condition.  I faced this myself and thought a lot about the prospect of losing my vision.  I decided to set a low threshold for going to the ER if I had any of the symptoms- better to cry wolf (even repeatedly) than to stay home to avoid embarrassment and end up blind! 

     

    • karenjaninaz
      karenjaninaz snapperblue

      Posted

      I am a retired nurse anesthetist so my rheumatologist usually works well with me. Eileen mentioned, on 14 of pred, which I an currently taking, most doctors believe can control symptoms. I am not going to taper to 131/2 whichI started until I have no symptoms.
    • linda17563
      linda17563 karenjaninaz

      Posted

      You might have the problem I have had and thankfully resolved....teeth grinding at night!....kept waking up with jaw pain, headache which terrified me....but it wore off during the day....so realised what it was....have a mouth guard now (not cheap) but works wonders.  Think it happens because in pain when I turn over in bed....and frustration, with the whole PMR situation!....
    • karenjaninaz
      karenjaninaz

      Posted

      i add that my rheumatologist mentioned that he goes by how the patient feels not just the labs. Her knew I am visiting my gp today and wants a report. He also said that transient pains in head and temples common but vision changes, constant headache, flu-like symptoms, painful scalp need immediate attention. 

      The chewing discomfort started while on hctz- I wonder if it hastened excretion of the pred??

      This morning it's almost gone since no hctz since yesterday AM 12.5 mg dose- lowered from 25. Today changing bp med.

  • Handbrake
    Handbrake karenjaninaz

    Posted

    Hi Karen, might be worth seeing your dentist for an x Ray, im currently having root canal treatment for similar issue 
    • karenjaninaz
      karenjaninaz Handbrake

      Posted

      Handbrake, I am seeing my dentist Monday. Since PMR I have seen the dentist 3 times: sinus pain, shifting bite(with aa) when he tried to whittle down some uneven teeth. It seems every little thing is augmented with PMR . The sinus pain, cheek pressure resolved on its own. My teeth seemed to move back into ther "original" sockets when I stopped the aa. This morning it seems better.
    • Handbrake
      Handbrake karenjaninaz

      Posted

      Karen, it's a bit of a nightmare isn't it! Good that things are settling down. I've signed up to a maintenance programme at the dentist...bit of jet washing every couple of months just to keep an eye on things.... flare busters haha 😜
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