Jaw Pain anyone?

[sbryan1]

Godgirl,
I am so happy that someone has brought up jaw pain, I too, have had jaw pain for no explainable reason. I have spent the last several months going to the dentist And an ENT and also my pulmonologist with nothing showing up. I think they may have thought me crazy. My ear was involved as well. I would go deaf and then get extreme vertigo. Finally the ENT decided it must be menierse desease and there was nothing to do for it! I mentioned it here on this website amd someone wrote that caffeine can cause these symptoms. I stopped drinking coffee and was put on a diuretic and I haven't had Any more problems.

However, these comments make me remember I too was reducing prednisone at the same time this was happening. I had to go back to 5mg to survive other issues. I'm now sure I can make a connection to GPA. Thanks for posting, your not alone and I'm not crazy! Cool!

Susan.

[godgirl]

Well, just an update, since it's been a month.

And surprise, surprise, it was a flare. I ended up at my primary doc's office because the joint pain and face pain got so bad I was barely functioning. As in, I couldn't get comfortable sitting, standing, laying down, etc. When I finally went in, I could barely get up from a sitting position. And I've never had that problem before.

My primary doc was also my mom's - I chose to go to her years ago because of my mom's rare auto immune disease (inclusion body myositis), and if anyone would see signs of auto immune issues, it would be her. And I'd like to thank "past Jen" for making that decision (me at an earlier age), because it's paid off. She took one look at me walking into her office and said, "you're a mess!" I told her everything that was going on, she got an MRI scheduled and called my rheumatologist. I went to see him shortly after my MRI, and he put me on a 40mg pred taper. I just finished it, and now we'll keep at 8mg, where I usually feel good. It's amazing how well I feel. Some of the joint pain has returned, and some of the facial pain, but it's like I'm a new person. My primary doc thinks my body can't live without the pred now, and was concerned I was in adrenal failure. Maybe? Neither her or my rheumy wanted to wait around to test that.

As to the MRI? It was clean, other than the existing lesions I have. I see neurology in a couple of weeks, but my rheumy is convinced I have trigeminal neuropathy - meaning the inflammation hit my cranial nerves again and did some damage to the fifth nerve this time. I still have some facial pain, and as I have gone down on the pred, it gets worse. The docs don't think that it will go away; they suspect the damage is permanent. When all this junk hit the first time 3.5 yrs ago, it affected my 8th nerve that time, with permanent damage to my hearing. I wonder which cranial nerve is next, and that scares the crud out of me.

Rheumy is talking about trying CellCept next... Anyone ever been on that? I handle the azathioprine well, and I hate to switch. He said that it's not working if I can't get off the pred... I'm not sure what to think about all this right now. We're not going to do anything until summer with my meds - just about when all this went down 3.5 yrs ago, I started back to school part time to finish my bachelor's degree. I graduate in May. All this on top of a full time job. I need to wait until life is a bit calmer before I mess around with meds.

OMG, this has been one heck of a spring for me. I'm just glad I'm feeling better. I still have my bad days, but not too many of them anymore.

Jen

[drz]

Well, just an update, since it's been a month.

And surprise, surprise, it was a flare. I ended up at my primary doc's office because the joint pain and face pain got so bad I was barely functioning. As in, I couldn't get comfortable sitting, standing, laying down, etc. When I finally went in, I could barely get up from a sitting position. And I've never had that problem before.

My primary doc was also my mom's - I chose to go to her years ago because of my mom's rare auto immune disease (inclusion body myositis), and if anyone would see signs of auto immune issues, it would be her. And I'd like to thank "past Jen" for making that decision (me at an earlier age), because it's paid off. She took one look at me walking into her office and said, "you're a mess!" I told her everything that was going on, she got an MRI scheduled and called my rheumatologist. I went to see him shortly after my MRI, and he put me on a 40mg pred taper. I just finished it, and now we'll keep at 8mg, where I usually feel good. It's amazing how well I feel. Some of the joint pain has returned, and some of the facial pain, but it's like I'm a new person. My primary doc thinks my body can't live without the pred now, and was concerned I was in adrenal failure. Maybe? Neither her or my rheumy wanted to wait around to test that.

As to the MRI? It was clean, other than the existing lesions I have. I see neurology in a couple of weeks, but my rheumy is convinced I have trigeminal neuropathy - meaning the inflammation hit my cranial nerves again and did some damage to the fifth nerve this time. I still have some facial pain, and as I have gone down on the pred, it gets worse. The docs don't think that it will go away; they suspect the damage is permanent. When all this junk hit the first time 3.5 yrs ago, it affected my 8th nerve that time, with permanent damage to my hearing. I wonder which cranial nerve is next, and that scares the crud out of me.

Rheumy is talking about trying CellCept next... Anyone ever been on that? I handle the azathioprine well, and I hate to switch. He said that it's not working if I can't get off the pred... I'm not sure what to think about all this right now. We're not going to do anything until summer with my meds - just about when all this went down 3.5 yrs ago, I started back to school part time to finish my bachelor's degree. I graduate in May. All this on top of a full time job. I need to wait until life is a bit calmer before I mess around with meds.

OMG, this has been one heck of a spring for me. I'm just glad I'm feeling better. I still have my bad days, but not too many of them anymore.

Jen

Having a flare or increase in Weg symptoms doesn't mean the AZA is not working since flares can and do happen regardless of which maintenance meds you are taking. I would seek out another second opinion from another expert in Wegs, like maybe at the Mayo clinic or Cleveland clinic. Some people never get off Pred but it doesn't mean their maintenance's meds are not right, sometimes Wegs is just resistant to complete remission regardless of treatments. My maintenance meds for past five years are AZA 175 MG and 5 MG pred with only some minor mini flares so far but my Weg experts advise no change since any reduction drastically increases the risk of major flare which might well be fatal in my case.

[Alias]

I haven't looked back at all your posts, so I don't know what specialties other than ENT you have seen... but I'm guessing you have access to other good specialists there in Madison, or relatively close by in Milwaukee or Chicago. You're also about a five hour drive or bus ride from the Mayo Clinic, where you could get a multi-disciplinary review of your situation. Just a thought.

Hope you get some answers and some relief.

(And once the weather allows, please give my regards to the Union Terrace. I misspent many of my college days there, pretending to study whilst drinking beer and watching the sailboats on Lake Mendota.)

[mishb]

Jen this sucks.

A knew you needed more pred, but I never thought of you having TN.
A few friends of mine have TN, and it's not much for them, or for me to watch them in such pain. I'm so sorry that you have another attack of it.

I'm glad you have an awesome doctor. Good on her for getting action done straight away.
I'm glad you are starting to feel more normal.

Big hugs to you and I hope everything settles quickly