Is anyone with GCA experiencing jaw tightness?

Posted by susang222 @susang222, Dec 23, 2023

I am on 30 ml of prednisone and wondering if I should increase the dose.

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@curlyqlinda1

I have had PMR for 2 years. The highest dose of prednisone for me has been 10mg. I have tried to wean off slowly 3 different times and when I get down to 2-3 mg I get a flare-up. I’m Experiencing a flare up now went 5mg for 6 days ago and for the past have been experiencing tighting in my right jaw. Talked with my doctor on Friday and he felt I didn’t have Giant Cell Arteritis since I don’t have tenderness in the scalp or headaches. I’m having the worse flare up right now and I am so concern about GCA. What type of pain relievers do your doctors tell you to take? I know advil or Tylenol do absolutely nothing with my pain level right now at 9-10. Sleep was nonexistence this past night.
Thank you for any info. Linda

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I would get some blood work done to see what your levels are. I only had tightening in my jaw, and I have GCA.

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@tillysam

I, too, was put on 80mg of Prednisone. Please speak to your doctor asap.

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I started on 40 and down to 30 and can't imagine being on 80mg. The side effects are hard to take.

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@susang222

I started on 40 and down to 30 and can't imagine being on 80mg. The side effects are hard to take.

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Yes I get jaw tightness it's a symptom of GCA if you haven't had a biopsy I would refer to your rheumatologist and get it done. I've had the biopsy it's quite simple taking a sample from you artery in your forehead. Doesn't hurt and very quick. Good luck.

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@marg47

Yes I get jaw tightness it's a symptom of GCA if you haven't had a biopsy I would refer to your rheumatologist and get it done. I've had the biopsy it's quite simple taking a sample from you artery in your forehead. Doesn't hurt and very quick. Good luck.

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@marg47, @susang222, @meg47, and all...I have for many years experienced jaw clenching at night, a bunch of jaw pain, and teeth issues from the deterioration of the jaws. With the GCA and PMR diagnoses, I was experiencing an increase in my jaw pain, with temple pain/aches, headaches, and of course the neck, shoulders, hip issues, and more.

Taking Prednisone at 10mg daily, I still have jaw discomfort and am waking up from sleep with jaws clinching and clicking loudly...even while using a Bi-pap with O2. I'll be asking my Mayo rheumatologist about this in February. I was on 80mg of Prednisone for 8 months when I was 50 years old to put Sarcoid into remission. I pray I will never be on that high dose again as I've had side effects and body deterioration for the following years.

Blessings and may you have improved health in this next year! Elizabeth

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@ess77

@marg47, @susang222, @meg47, and all...I have for many years experienced jaw clenching at night, a bunch of jaw pain, and teeth issues from the deterioration of the jaws. With the GCA and PMR diagnoses, I was experiencing an increase in my jaw pain, with temple pain/aches, headaches, and of course the neck, shoulders, hip issues, and more.

Taking Prednisone at 10mg daily, I still have jaw discomfort and am waking up from sleep with jaws clinching and clicking loudly...even while using a Bi-pap with O2. I'll be asking my Mayo rheumatologist about this in February. I was on 80mg of Prednisone for 8 months when I was 50 years old to put Sarcoid into remission. I pray I will never be on that high dose again as I've had side effects and body deterioration for the following years.

Blessings and may you have improved health in this next year! Elizabeth

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Thank you for your response. I am on 28 mg now and can't imagine how hard it was to be on 80 mg for so long. Today, I have a headache, and I am wondering if it is because I am lowering the dose of prednisone. Did you find any pain medicine to give you relief? I am guessing the jaw paw stays.

Sorry, you have been dealing with this for so long.
Be well, Susan

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