This is sick... but I actually feel giddy because I just learned a new name for a symptom I have been having for many years now. It's called jaw claudication, and in its simplest terms, it simply means pain in the jaw upon chewing. I have these shooting, eye-watering pains in my jaw sometimes when I first begin eating. They seem to go away after the first few minutes of eating. Guess what...they happen because of inflammation that leads to a form of vasculitis in the veins of the neck and head area. It is improper blood supply that makes this pain happen. This disorder is sometimes called Arteritis in non-lupus patients, but it is definitely an inflammtory disorder that usually only affects people over 50. These pains went totally away when I was on a high dose of prednisone and have started to come back lately now that I am taking so little (5mg) of prednisone. Plus, I sometimes have moments when I have trouble opening my jaw wide enough to eat comfortably, and at one time before I was diagnosed, I had episodes of lockjaw.

It is so weird how finding out new information actually makes one kinda HAPPY. I feel empowered by information somehow. Lupus twists the mind, lol.

Hi, Aquanegra, Yep, I'm like that, too---just want a NAME for what "it" is.

Do you grind your teeth at night? I do. I had a little night guard made some years back, but the dog mangled it. I should probably pay to get another, as I wake up often with sore jaw. Can't be exactly good for the teeth, either...?

Hope you're doing OK in the main, claudication notwithstanding! My best to you, Vee

It sounds more like TMJ Disorder to me. I had those exact symptoms. Mine was caused from a trama/injury and I ended up having to have bilateral total joint replacements. Mine locked and would not open at all. Who diagnosed you with this? They tried many things to get it open and finally had to have surgery. They confirmed everything by MRI. Does your jaw ever pop when you are eating or in the morning? It may not be this but I would hate for you to have to up your prednisone when the problem could probably be fixed with a bite splint at night. It can really wreak havok. I am here to tell you. It can be VERY painful. They had me on HIGH doses of pain killers including dilaudid at one point and even that didnt knock out the pain because the majority of the pain in nerve related. I so completely understand you wanting a name to it. BELEIVE me. I am still in limbo land myself. But this I am really familiar with unfortunately. I have experience mild to severe symptoms. Just check it out. I could be completely out there with this but it can't hurt to get a second opinion. Many Lupus patients have TMJ. Mine was not due to lupus but I have read that many do.

Erin

I had facial pain, and pain while chewing, and I also had trouble swallowing. I found it different from TMJ, the feeling that is was completely different. TMJ sometimes random, the other pains came with my flares, and subsided when the flare was over. TMJ doesn't. or not in my case. That was my two cents, lol, I expect change:p
Felicia

Yes, I do think that the symptoms are very much like the ones you have with TMJ problems. I saw that in an article I read, TMJ is one of the disorders that has to be ruled out when a patient presents with these kind of symptoms. And some people who have lupus also have TMJ, so that is another level of diagnosis that would have to be figured out. But I do think that my symptoms are related to vasculitis secondary to lupus. I haven't seen any evidence that I grind my teeth or clench my jaw, nor have I ever experienced my jaws popping. My jaws don't ache or hurt in a general way. And when I was on higher doses of prednisone, it killed the symptoms.

It is true that vasculitis doesn't have to be associated with lupus, but it is autoimmune in nature, and if you already have an "umbrella" autoimmune disease like lupus that can affect any and all tissues of the body, I think it would be a pretty accurate diagnosis. I went back and re-read the Lupus Foundation's page on vasculitis at http://www.lupus.org/education/brochures/vasculitis.html and it helped to clear some things up about this for me. Plus, I hunted up some more articles. Man, this disease is like a puzzle that keeps adding new pieces. More puzzle pieces I have put together recently:

-There are occasional days when I wake up and the vision in one of my eyes is off-kilter. I can see out of it, but I can tell that things are not quite in normal focus and there is a bit of an aura around things. This effect will wear off as the day passes. Experience tells me it is likely that I will have a bad headache very much like a migraine on these days. I had my first migraine last year right after the first time my doctor started reducing my dosage of prednisone. Zero history of migraines. As my dosage has declined, the incidence of these headaches is speeding up.

-There is an area of my right temple that is tender when any pressure is applied to it. Just to the side of the eye, in front of the ear. I found out that this is significant because a branch of a major artery runs under this spot. Whenever I forget and prop my head on my hand in this spot, it begins to hurt. Been this way for years. In my secret thoughts, I wondered if there was something under there, under my skull--an injury, a blood vessel, a growth--that was causing this.

-Before I had been on meds long enough to get my lupus under control, a lot of my hair had fallen out and I was bald in some places. On my scalp there were these dark grayish/blackish splotches very distinguishable from the normal light color of my scalp. I thought it was strange, but didn't know what to make of them. They seemed to have many thin layers and peel off. These were the last places to grow hair back on them. I have since found out that these were patches of scalp necrosis, where the cells on my scalp died.

I believe all three of these symptoms were/are caused by vasculitis.

Everything you are saying makes sense. But has the doctor told you this or are you speculating? I never knew I ground my teeth either. I apparantly did it when I was sleeping. My dentist actually was the one that told me that there was evidence of bruxism. I have pain in that temporal muscle (the one on the side of your head by your eye. The fact that your jaw actually locked is what concerned me. It just didnt make sense that vasculitis would cause that problem since what normally will cause the jaw to lock it the disc being out of place. When mine locked mine was out and dissolving. This is why they had to rebuild my jaw with a prosthetic joint. If you have already seen doctors and they are telling you that it isn't TMJ then there you have it. I was only suggesting that you should talk to them and make sure you rule it out. I can be seen by MRI pretty simply. I ended up with necrosis in one of the connecting muscles. But I do know that in milder cases where the disc has not been damaged or out of the socket completely a bite splint can do wonders.

Hope you feel better soon!

Erin

I am familiar with teeth-grinding and know that it doesn't usually happen when you are awake, only when you sleep. So, it would follow that others would have to tell you that you grind your teeth. When I had those episodes of lockjaw, this was the first thing that got checked for, by my doctor and my dentist. I also asked those who might be around me when I was asleep. I honestly do not know what caused my jaw to lock. The doctors never gave me any diagnosis and it eventually stopped. The jaw locking part is not the symptom I am saying was caused by vasculitis, only the pain in the jaw upon chewing and sometimes the feeling that my mouth won't open as it should. You are right, I cannot think of why vasculitis would cause the locking part. Although, you mentioned the word necrosis, which is one thing that can be caused by improper blood flow, which is one way to describe what vasculitis is.

I am familiar with teeth-grinding and know that it doesn't usually happen when you are awake, only when you sleep. So, it would follow that others would have to tell you that you grind your teeth. When I had those episodes of lockjaw, this was the first thing that got checked for, by my doctor and my dentist. I also asked those who might be around me when I was asleep. I honestly do not know what caused my jaw to lock. The doctors never gave me any diagnosis and it eventually stopped. The jaw locking part is not the symptom I am saying was caused by vasculitis, only the pain in the jaw upon chewing and sometimes the feeling that my mouth won't open as it should. You are right, I cannot think of why vasculitis would cause the locking part. Although, you mentioned the word necrosis, which is one thing that can be caused by improper blood flow, which is one way to describe what vasculitis is.

My necrosis was due to a blood flow problem. I had been in a hard spasm for 2 years. They even tried to disconnect the muscle when I was in surgery to see if it would let go. It never did. That sucker still bothers me. But the spasm was caused by my jaw locking. I was told that the pain was due to the muscles contracting to prevent you from further injury. Who knows. I saw so many drs for this. It took 3 surgeries to get the problem fixed. This was almost 10 years ago an now the joint is acting up again. I was told that it would probably only last about 10 years and then have to be replaced. I hope you get to feeling better. I have the same pain, it is mild or major and comes and goes. I use a bed buddy. It is a heating pad that is filled with rice and you put it in the microwave. If it starts hurting more often than when you are eating, you might try it. It really does help. I would imagine that even if it was due to blood flow this might work for you too. That being said, if anyone knows of a way to help with the remaining joints in my body hurting, I am all ears!!

Erin

Thanks for your encouragement, Erin. I can see that you really have a serious problem with your jaw, while mine is troublesome, but minor. All those surgeries. Real relief seems to be just out of reach for some of us. I hope that you find strategies to relieve the joint aches you have all over. I am in a pretty good place right now as far as pain, I only have some occasional bouts, so I am fortunate. My only current worry is whether being on nothing else but 5mg of prednisone while having nephritis (though it seems to be in remission, according to my most recent labs) will be something I will pay for later. My heart goes out to those of you who are in pain on a daily basis, that has to be tough. Good luck with it all!

My only current worry is whether being on nothing else but 5mg of prednisone while having nephritis (though it seems to be in remission, according to my most recent labs) will be something I will pay for later. My heart goes out to those of you who are in pain on a daily basis, that has to be tough. Good luck with it all!

Did they lower you dose of prednisone, due to your nephritis? Were you taking other drugs you had to come off of because of the nephritis? Have you had any liver problems? :confused:
Felicia:wave:

Hi, Felicia. No, I haven't had any problems with my liver so far. Sorry that I can't be helpful if you need some insight on that. I was on Lipitor for about a year and a half and they checked me twice for liver problems, there were none. I was also on an ACE inhibitor, enalapril, I think, along with 200 mg of plaquenil along with the prednisone. The reason why I am off everything except 5mg of prednisone is that I have been trying to get pregnant since April, and this is what my doctor thinks it best to do. There have been a lot of alerts in the news lately about ACE inhibitors and pregnancy, and of course, the makers of Lipitor and other statins go out of their way to boldly state that they are not to be used by "women who are pregnant or may become pregnant".

I see the obvious need to be off the ACE inhibitor and the statin, but I have less confidence in my doctor's insistence that I be off plaquenil at this point, as this leaves my disease with nothing but a pitiful 5mg of prednisone to keep it in check while I try to become pregnant. Especially since I have read all the accounts of those here who remained on plaquenil safely throughout a pregnancy. I know all the demons that can come with prednisone, yet my worry is that as a person with nephritis, I need some back-up help to keep from flaring, namely, to be on plaquenil to support such a low dose of prednisone. I have been informed that if need be, my dose of prednisone will be increased during a pregnancy to keep things under control. I do plan to get back on everything-plaquenil, ACE inhibitor, statin, and probably Cellcept or something like that-after my experiment with pregnancy ends. I am praying that this will all be worth the risk in the end.

Hi, Aquanegra
I knew you were trying to became pregnant, I keep you in my prayers. I was one of those, where they had to keep doing the pred step down during my pregnancy, it was rough, but it was worth it. Ally turns 6 mos. on Wednesday.
I was on Catapress3 patches,Lotrel, and atenolol, benicar, plauenil *sp*, my luck, and my angst was at losing my med bag in Cape Cod, while on a trip with my hubby's family, I wasn't going to be in touch of my Doctor, for a month, and my hubby's dad is a doctor. He refilled my lotrel and that all I had, I got pregnant in that week I was off everything but lotrel. I could only be on labetalol, and prednisone through out m y pregnancy. I wish you the best of luck .
Felicia

i find this post very interesting.. i am only 28 years old and about two weeks ago i started having jaw pain.. i have NEVER had this before.. at first i thought it was wisdom teeth but that is not the case since i only have one and its not a problem. it almost felt like someone punched on both sides of my face and the pain would actually radiate to my outer ear like a nerve or something. i have been off plaquniel for three months now since we are trying to get pregnant and i feel like all these weird things are happening to me. my jaw pain has subsided some the dentist said its TMJ but i don't believe that. and I do not grind my teeth either...now oddly enough i have a small rash on my arm so i was put on prednisone... could my jaw pain be attributed to the lupus!?

any thoughts about this would be great! thanks!