Jaw & Ear Pain
Posted , 8 users are following.
Hi all I have GCA Fibro, Pmr I am still on 9mg pred can.t seem to go down I'll give it a go when my next issue settles down. For 2 weeks I have been haveing slight ear and jaw pain but in the last 5 days it has been getting seriously painful doc say it's not GCA. Another doc looked at it and said drum is good bit of inflamation past that it really hurts took 5pred extra yesterday don't think it made a difference. Temple pain also maybe scalp tenderness so over this it's coming up 4 years arthritis starting to show up hands. Has anyone had anything similar last time I had this pain had surgery to remove 2 rear teeth left side but it got in the bone just looking for answers.
0 likes, 9 replies
Kacee01 alley2
Posted
Hi,Alley 2, I was diag. with PMR and had symptoms of gca, sed. Was97. That was in 2010. The next yr. I was diagnosed with trigeminal neuralgia in left lower jaw pain was unbearable, neurologist diagnosed after mri. Said I had swollen looped artery touching the trigeminal nerve, Theres different surgeries they can do for trigeminal, my prednisone is at 2.5 mg. And I take meds for trigeminal. I hope your jaw pain goes away, and you don't have a swollen artery from the gca causing this. I'v had a rough time for 10 years, I'm so blessed to have good days. Good luck and God Bless.
Kdemers Kacee01
Posted
Thanks so much for alerting me to trigeminal neuralgia. A description of all of my cranial pain. I used to try to find a way to place my head on the pillow to relieve the pain. Dr. told me "lips together, teeth apart" but nothing relieved the constant pain. Doctors need to see the relationship of all of these symptoms.
EileenH alley2
Posted
Why is ear pain not GCA? A recently published study says it is:
https://www.ncbi.nlm.nih.gov/pubmed/31420810
If I had jar, ear, scalp and temple pain returning I would want a serious consideration it could be a flare.
alley2 EileenH
Posted
Thanks for info good read I have a doc appointment tomorrow it's got bad really sore exspecially where their are no teeth last time this happened I had 2 rear teeth removed surgically it's the same side my face was really swollen can only open my mouth slightly very painful hopefully I can get it sorted. same side as my cartorid aretery blocked and my subclaver could have a part in this pain.
dan38655 alley2
Posted
As far as your rate of tapering off of prednisone, note that over my six years of taking pred for PMR, I have only been able to reduce by 25% each year.
That's 25% of my current-year dose, not 25% of my original dose.
I was (as is typical) told by my rheumatologist to reduce too fast, so within my first year I then had to hold at my reduced dosage for all of a year before exploring any further reductions.
I should have nearly stopped reducing when I got to 10mg, but kept reducing as instructed (by 1mg/month) until I was crippled and quite miserable.
Last year I got down to 2mg for at least a couple of months, and this year I have been at 1.5mg for several months without any flaring-up of my symptoms.
My dosage requirement is somewhat seasonal as well, always considerably higher in the summer and with new dosage "lows" being achieved in the late fall months.
dan38655 alley2
Posted
I had a lot of night-time ear aches when my dosage was too low. It was definitely worse when I slept with the side of my head on the pillow, so I mostly slept on my back.
I would also wake up as many as eight times per night, due to my skeletal and other discomforts, all of which seemed to be caused by my too-low dosage relative to my actual dosage requirement in real time.
Eventually my rheumatologist became approving of my self-adjusted dosage changes, so no more worries that I might run low on my prescribed prednisone.
Kdemers alley2
Posted
Hi Alley,
I had PMR and later GCA. The jaw pain, the ear, forehead and eyes,the scalp, were all signs of my GCA. Believe in your own symptoms and find a doctor who listens. You may need to go up much higher on the Pred. You can always taper down. Inflammation is the problem and it is dangerous. I suffered a slight stroke. I even took antivirals for a year to keep it all at bay. All started in 2013 for me; the last two years have been good, finally down to no pred. I wish you luck; remember there are people who can help.
Kerry
Tinapoly1 alley2
Posted
When you are ready to try & go down on your Prednisone dose do it a 1/2 mg. at a time. When trying to go down 1mg I could hardly walk in 2 days & my collar bone hurt so bad. I took me 1 1/2 years to go from 7mg. to 5 mg. . When I was initially put on real high doses of Prednisone it was easy to go down each week but your body lets you know loud & clear when it is not ready to go down any more for a long while. As far as ear pain I know there is a nerve at the top of our jaw bones near the ear & at times when I get my teeth cleaned at the dentist I have the most pain nerve pain shooting into my ear. I confirmed with my dentist that it was the nerve from the jaw. This pmr/gca is a nightmare. When I had 2 urethra & bladder surgeries this past year the doctor went to sew me up & the stitches went right through my flesh so he had to do micro surgery & sew me up from the outside in. I also went to stand up last year & took one step & felt a pop & was limping. 3 hours later limped just 10 feet & screamed . Half of my calf muscle tore off the bone. My skin is so thin & I lost 95% of my thick ,long hair .I get on virus after another & that drug also makes our immune system very weak. All these things from just 2 years on Prednisone. Devastating ! Best wishes & taper off very slowly.
alley2
Posted
Hi all well i have found out what is wrong with my Jaw after a ct test and my Jaw and ear pain is arthrts in that area just when you think you get a bit ahead . well this would have to be at the top of the list painful things ive ever had it really badly hurts. well on the positive side of all this its not my gca fibro or pmr