Is this early GCA?
Posted , 9 users are following.
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
iellen32 karenjaninaz
Posted
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
Posted
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 karenjaninaz
Posted
karenjaninaz Anhaga
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EileenH karenjaninaz
Posted
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!
karenjaninaz EileenH
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lodgerUK_NE karenjaninaz
Posted
Take no chances and no prisoners and watch those eyes like a hawk.
EileenH lodgerUK_NE
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Jersey_Royal karenjaninaz
Posted
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 Jersey_Royal
Posted
I've been on pred for over well 6 years. No sign of getting off either...
snapperblue karenjaninaz
Posted
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 snapperblue
Posted
linda17563 karenjaninaz
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karenjaninaz
Posted
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 karenjaninaz
Posted
karenjaninaz Handbrake
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Handbrake karenjaninaz
Posted