Jaw Pain anyone?

[godgirl]

Question for you all.

I went off the prednisone - finally - after three years. I went off two weeks ago. A couple of days in, I started getting a lot of facial pain, and now I can hardly eat or drink anything. The pain is mostly in my upper and lower jaws and moves up behind my eyes.

Anyone have this before? I'm going to the dentist to rule out a tooth issue, but I'm sure it's not. And I have an appt with the ENT tomorrow, but I'm afraid they're going to say, "oh, everything looks fine".

The pain is a dull, ache, but it's consistently there unless I take ibuprofen. Almost like a toothache in my whole face! But nothing is swollen, and nothing hurts to the touch.

Again, anyone have this?

Jen

[Pete]

Hi Jen,

I hate to say this, but you could be starting a flare. You may want to talk to your wegs doc and see if resuming lower dose prednisone is warranted. About four years ago, I had tapered off. Then, after about four months, I started having roaming joint pains. That led to my first course of rtx and back up to 40 mg of pred. On my next taper, I got down to 3 when the joint pain started again. Wegs doc said to go back to 4-5 mg and if the pain went away, to stay at that dosage. It did, and I'm still on 5 mg.

Unfortunately, some people just can't be off pred...

[godgirl]

Yeah, I wonder that. I've been having problems with severe joint pain since I got down to 4. Unfortunately, I think my wegs doc thinks it's my weight causing it. I think he's very wrong. It's ridiculous. It's like he doesn't believe that I never had problems before. He just wants me off the prednisone. I am so frustrated. And I hurt! The jaw pain is new, and I know it's my sinuses. But ai have to play the "let's rule everything out" game. Stupid.
Thanks for the advice, Pete. I appreciate it.

Jen

[Jaha]

I think Pete could be right on target about the flare.
I have had the jaw and facial pain when trying to wein off the press and also pain in different joints. When I would call the thru my she would up my preds and most times it would go away. I am Wishing you all the best for getting the right dx and treatment.

[mishb]

Jen, how long did it take you to go off pred?
Lets say from 5mg to zero, how long did that take.

For me, it has taken 3 years to go from 5mg to 1mg

The reason I ask, is because my aunt (has RA not WG) went from 7mg to zero in seven weeks - 1mg a week.
Her teeth and face hurt her so bad, that she went to the dentist and asked him to remove the teeth that hurt so bad.
The dentist said that he couldn't find any reason for the pain.

In stepped the wonder Phil (Dr and Batman) and he suggested that maybe her pred drop was too fast, and her adrenals have not kicked in.
This was even before I found out that she had reduced her pred to zero. Phil picked it straight away.

My aunt ended up in hospital, and low and behold, she was advised to reduce her pred, and it was too quick.

She is not back on 5mg, and everything is back to normal, no facial pain, no painful jaw or teeth.

Therefore, it's not necessarily a flare, but maybe you need to still have a low dose of pred, for a little while longer

[MikeG-2012]

He just wants me off the prednisone. I am so frustrated. And I hurt!

Jen, Will your doc tell you why he wants you off the pred? If it's "just to get off of it", then that's really not a valid excuse.

YOU need to be COMFORTABLE!

Remind him that all wegs patients are DIFFERENT, and cannot be treated from any textbook--except the one that YOU are writing as you go along.

[Alysia]

Hi Jen.
I agree with Michelle and with dr. Phil ♡
I would go back to the pred and see if it helps. If the doze you were on mostly was 5mg, I would go back to it.
Jaw pain can come from the gums, the ears, the sinuses, the joints, the eyes - and all of those can be affected by wg activity. But since you just quitted the pred it makes sense that it is the lack of pred.

I hate the dumb docs who dont understand how much the pred is important for us.. my wg dr. allows me to take as much pred as I feel like (usually its between 30mg to 5mg).... eventhough I am a pred glutton :p

[godgirl]

Thanks for your responses, everyone. FYI - I'm on 200mg of azathioprine as well.

Update: Funny, saw the dentist and surprise, surprise - nothing wrong with my teeth. And the ENT scoped my nose and funny, everything looks fine. I LOVE that everything is fine, but I feel like crap.

Michelle - good question about the pred taper. I've been tapering for a couple of years. I keep going up and down. But since I hit 5mg, my doc doesn't want me to go back up. I usually taper 1mg per month, however I've spent the last 6 months going from 4 to zero. It might be too quick, but I personally think I need to be on at least 5 to function! As to my jaw and facial pain? Yeah, it feels like I have a horrible toothache in my face! It's really bad... I'm not eating much and

Mike. THANK YOU. God, I'm not sure why my doc is so rabid about wanting me off the prednisone. The lower I go, the more problems I have just walking. Horribly stiff and painful, and I get tired so quickly. I work full time and am working on my degree part time. You're absolutely right - I need to be comfortable! I am not sure why this is such an issue. I know my blood sugars get worse the higher I am on the prednisone, and I know my blood pressure is worse the higher I am on it, but I can control those things. I can't control the pain in my joints or face, or the fatigue, or any of the other stuff.

The craziest part of this? Last time I was in, he said I had fibromyalgia now, too (which might be the case), and said that was causing the joint pain. He's talking about taking me down on the azathioprine next. Uh, but I'm not sure how, because I feel awful. I think he's a good doc, but I have this feeling he's given up on me.

So, is it realistic to expect to be on pred as maintenance for the rest of my life? My mom died of a different rare autoimmune disorder - she was on 9mg as maintenance for years.

[drz]

Once I went to dentist with complaint about pain in upper jaw. I thought I had another infected tooth and might need another root canal. After his examination he said there was nothing wrong with my teeth but I had a sinus infection. I was doubtful but agreed to take the antibiotic and the pain went away in a few days.

I also remained on 5 mg of pred and a maintenance dosage of AZA too. Many people cannot get off pred or get below a certain dosage of 5 to 10 mg day without having a lot of discomfort from their residual Weg symptoms. Also many people take a low dosage of pred in the 5-10 range for other medical issues besides Wegs. Our goal is to attain the best state of comfort and health our body and illness permit so it varies from person to person. There is no one size fits all for treating Wegs or actually most things for that matter. It is great is you are a lucky one who can get and maintain a long term drug free remission from Wegs but this may be a minority of patients and certainly is not the normal state from treatment for everyone.

[MikeG-2012]

Mike. THANK YOU. God, I'm not sure why my doc is so rabid about wanting me off the prednisone. The lower I go, the more problems I have just walking. Horribly stiff and painful, and I get tired so quickly. I work full time and am working on my degree part time. You're absolutely right - I need to be comfortable! I am not sure why this is such an issue. I know my blood sugars get worse the higher I am on the prednisone, and I know my blood pressure is worse the higher I am on it, but I can control those things. I can't control the pain in my joints or face, or the fatigue, or any of the other stuff.

You're welcome. Remember the one thing that physicians will fight you on a regular basis--YOU know your body better than they do. Some are intimidated by INFORMED patients. The ones that are encouraging their patients to educate themselves on how they can help them do their job, are some of the leaders in their respective fields.


I think he's a good doc, but I have this feeling he's given up on me.

I really think this sentence says it all for you. Maybe, just maybe, you are trying to tell yourself that it is time to find another doc?

[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 :hug2: