Jaw pain anyone?
 

I am in a clinical trial with a bisphosphonate called Clondronate which is presently on a FDA fast track here in the U.S. and given liberally in Europe. Although it requires an hour post ingestion where food or additional liquid is withheld (which can get a bit long to wait for that first cup of morning joe!) it hasn't been troublesome for me in terms of side effects until recently. After about 2 weeks of daily doses of Clondronate I noticed this dull ache in my lower jaw on my right side. Initially I chalked it up to flossing too zealously and later to brushing with too much vigor. I eased up on both without any improvement, so I gave up chewing gum and tried to notice if I was grinding my teeth or clenching my jaw when under stress. I do not seem to be exhibiting either behavior. Finally after 2 full weeks I sent off an email to my clinical trial nurse to let her know that my jaw was aching and not improving. In the meantime I stopped the Clondronate until I saw my dentist who did not "see" anything alarming. We decided mutually to forego the med until the symptoms abate. If there is no improvement in 2 weeks he will do some x-rays. If it resolves spontaneously I will resume the med. FYI: I did have a dental cleaning and x-rays in mid-December prior to starting the trial.

My onc, dentist, and clinical trial nurse do not seem to have much experience or knowledge regarding the early signs and symptoms of ONJ. Has anyone out there experienced a dental problem with an oral bisphosphonate, or know someone who has? I really want to continue the drug, but don't want to have a dying mandible! Thanks!

Laurel, you might want to consider having a panoramic xray done at least for a baseline.

Also, if you are concerned, you might want to consider a consultation apt with a good oral surgeon.

Clenching may also be done while you are sleeping. A typical sign of clenching is to feel inside your cheek with your tongue. Do you feel a horizonal ridge? It is quite common to have this ridge with clenchers. The more prominent the ridge, the more significant the clenching. Check inside your cheek when you get up in the morning.

Hope this helps.

Laurel,

I hope your jaw pain has subsided. This is an interesting trial. Please let us know how it is going. I have not started Zometa yet. I have to have a panoramic x-ray on the 14th before starting.

Amelia

Maryanne and Amelia,

Thank you for responding to my post. I am not sure if I have a ridge or not, Maryanne, if I do have one it isn't much of one! That sounded funny, but I think you probably follow me. My dentist only did bite wings as that was all the protocol for the SWOC study requested. I think if this continues I will insist on additional studies. Sometimes I think this is caused by a failing filling, but it really isn't painful in a tooth. Where it is troublesome is in that space between my upper and lower jaw and radiates to the very rear of the lower jaw on the right side only. I have now given up any foods that make me work my jaw excessively such as tootsie rolls, bagels, etc. I love those midget tootsie rolls with an ice cold glass of milk! I am also trying not to be so talkative, but seeing as I am a real Chatty-Kathy I do not think I will have much success in that effort!

I will let this play out for the next two weeks without the Clondronate. I can miss a month and stay in the study so I will be pushing to resolve this sooner rather than later. Wish the docs weren't so clueless on ONJ. I'd probably find out more if I called one of the attorneys on the Fosamax suits! HA!

Ah, well, where would the fun of B.C. be without a little excitement????

Laurel, in my opinion, a panoramic xray would be more beneficial then bitewings.

Stay away from tough things like beef jerky, gummy bears, taffy, etc.

Do you have a history of TMJ disorders?

Just out of curiosity, why are you taking clodronate?

While I was on treatment, I had terrible problems with my jaw. It would lock up on me to where I could hardly open my mouth. It made popping noises and got very painful, causing headaches. I had never had problems with it before. I went to my dentist and he made a bite guard for me to wear at night. Solved the problem almost immediately. I was grinding or clenching my jaws together at night, I'm assuming it was stress related. I wore the rubber guard (you can also get them at the drug store much cheaper) for around a year and don't have to wear it anymore. Don't know if this may be your problem but it's worth a try getting one. ..sherryg683

Thanks, Sherry, I think I will try one of those over the counter mouth guard thingies. My jaw does feel a bit improved today. I have been staying away from chewy foods so perhaps that is making a difference.

To answer Susan's question, I am taking Clondronate, a bisphosphonate, to strengthen my bones to help prevent metastasis. The theory that bisphosphonates help to prevent mets has been born out in studies, but now they want to see which med is most effective with the fewest side effects. The trial is with the 3 drugs: Zometa, Boniva, and Clondronate. I was computer randomized to Clondronate which is taken daily in the morning.

If I continue to have this bit of what I am hoping is a bout of TMJ resolve, I will resume the Clondronate asap. I must admit it is a drag having to wait an hour to have my morning coffee. If I wake up to pee in the early morning hours, I stumble downstairs, pop the pills, hit the recliner and snooze until morning. You must remain upright post ingestion of the med for an hour. On these nights I am able to grab my coffee when my eyes open again. It's not the best solution. The recliner isn't all that comfy in the upright position, but I don't have to occupy myself for an hour before I may eat or drink in the morning.

If I had drawn the Zometa arm I would have had monthly infusions for six months, then I think it went to every three months. The study continues for 3 years. Had I drawn Boniva I would only have had to wait a half hour for my coffee! I sometimes wonder if I'll make 3 years with this stuff because it does muddle my mornings. It's then that I remind myself of the battle at hand and that this is another weapon to arm myself with against BC!

Thanks for all your concern!

Laurel, I'm sorry to to hear about your jaw pain. Harrie is probably the most informed among us regarding dental issues. I hope you can find some comfort. Love, Bill

I was talking to a colleague of mine at the gym yesterday. He is a periodontist. He said xrays are not indicators to determine if you are a candidate for ONJ. He said a test would need to determine the turnover rate of the cells and as far as he knows, none is availble. He also said prior to any invasive procedure such as surgery, periodontal treatment, root canals, etc, it is recommended to be off the IV biophosphonate (Zometa) for 3 to 4 months.

Mary Anne,

I think this may be an episode of TMJ. Not certain yet, of course, but hopeful that is the case. I am feeling improved with my treatment of softer foods. I work in a stressful industry, so perhaps I am clenching. My lower jaw back behind my last molar aches. Not as much as it did, but it is still there. I will visit my dentist again if necessary, but since it is improving I thought I'd try the Clondronate again tomorrow morning and see if it exacerbates the problem or not. If it doesn't cause any worsening of symptoms, I'll just stay on the protocal. If it causes more discomfort to arise, I'll be whining on another post! I will let you all know how it goes.

Thank you for inquiring for me of your peridontist friend.

Laurel, I seriously doubt that the pain in your jaw is from the med. My understanding is what happens with the ONJ is when you have a procedure such as a root canal, or some kind of surgery on the jaw, that neucrosis occurs at the site of the procedure and basically you end up with a big abcess in the bone at that location. There are no indications in the jawbone that will preceed this problem. What I am telling you is just from information I heard within the dental profession.
This neucrosis from the biophosphanate happens only in the jaw and no other part of the body.
If you have not had any significant invasive dental procedures done recently, I doubt your jaw has anything to do with ONJ from your med.
This is just my opinion with no knowledge of existing conditions in your mouth.

Osteonecrosis
 

I had a bitewing xray and it scaped the inside of my jaw with it and caused a wound while on zometa. in addition to WBR with mass steroids. MD Dentists oral surgeons peridontists wound drs etc......Led me to the mayo clinic, he did a facial ct, after my Jaw lit up mt pet/ct scan, and shows the bones of the jaw and where the necrosis is.

My jaw went from normal ok gums teeth , to crooked, open gums and then to exposed bone. Lots of jaw heaviness and teeth sensitive, numbness and worsening of "being hyper aware" of your teeth/mouth and clenching down.
Hang in there, Biotene mouth wash is good for sensitive teeth and gums. Good Luck

Darita

Darita,

So your ONJ began with a scrape from a bite wing? Can you please try to recall your earliest symptoms?

I began to have pain after flossing my back molar. I always try to get into the space between the gum and that last molar. There is no apparent inflammation visible, but I developed a throb in that rear molar area, mainly behind that last molar. It has lessened over the past 10 days. The question is: why? I followed my dentist's recommendation (and MaryAnne's and Sherry's) to avoid chewy and hard foods, gum, and monitor for clenching. I also stopped the Clondronate. Now which is it the chicken or the egg?????

Despite these measures the "awareness" of that lower posterior jaw area remains. I decided to resume the Clondronate, a bisphosphanate, this morning to see how things go. I am hoping this is just TMJ which should continue to resolve. I suppose it could be a problem with the molar itself, although it is not where I feel the discomfort, but pain can radiate along the nerve. I do have an old filling in that tooth. I promised myself I'd follow up on the problem with my dentist if it persists. I am wondering if TMJ occurs on just one side and won't it be painful with mastication?

I very much want to protect my bones, but naturally I want to be proactive if there is a problem developing. I have learned to listen to my body with things such as this.

Any detail you can recall from your initial symptoms will be very much appreciated, Darita. Thank you for responding to my post.

Symptoms
 

Hi Laurel

The earliest was the scrape which did not heal, after about 5 months then the lower jaw underneath really ached all the time. Then I had what I thought was an abscess, but was not. The skin was flapping off my molars. I did need an additional root canal on the adjacent tooth to the first one. The pain causes increase in TMJ symptoms, jaw heaviness and sometimes sharp stabs. I would check with your dentist for some "gentle" care to make sure there is nothing wrong or an abscess with the tooth, sometimes they will put you on antibiotics just to make sure. If the gums are irritated Kenalog paste, try first then Lidex gell are two rx's that have helped other areas in my mouth heal. Biotene mouth wash is awesome, I have also used tea tree oil mouthwash from health foodstores. Quit flossing and use water pic walmart sells one at about 25.00 that isn't too bad, you can even put the biotene in the water pic. Use the gentle settings till your gums are used to it. should only have to floss about 1 per month if you water pic twice a day.


Good luck take care and keep me posted
Darita

Hi Laurel,

I am about to start a trial for simivastin to see if that reduces recurrence. I just got diagnosed with osteoporosis so started alendronate (70 mg weekly/generic Fosamax). I've only done 1 week so far, but am concerned about jaw problems.

How much are you taking on the trial?

- Anna

Anna,

My mouth is feeling improved, but not completely normal. I did return to my study med, Clondronate, last week. I take 1600mg daily. It seems like a large dose, but what do I know? I do know that taking it daily is a drag because I must take it on an empty stomach and then wait a full hour. Messes with my morning cup of joe!

I am hoping I am okay on this stuff, but like you it appeals to my paranoia! Good luck!

it does seem like a large dose, and difficult to do daily. I've only done one dose of Alendronate, and found it hard to wait an hour. Also experienced nausea & stomach upset. Hope it's not that bad this week.

Alendronate is an aminobisphosphonate and clodronate is non-Amino. I did check one website and 1400mg seems to fall within (actually on the lower side) of the daily dosage.

Hope you get to the bottom of why your jaw is hurting.

take care,
Anna

You might want to ask your dentist about a Chlorhexidine mouth rinse to use. This is what they use at the Univ of So Calif in the treatment of their pts with ONJ. It is a prescription mouthrinse.