Hi All
Something that is worrying me, I have MRONJ and the left part of my mandible has died due to the bisphosphonate caused osteonecrosis, at present I have no exposed bone.
But in the last 24 hours I've developed a prominent numb lower lip and chin, mean no feeling at all in the chin the witgh of my lips.
Can anyone shed any light?
Paul
Have you considered Forteo? It's the antithesis of bisphosphonates.
bisphosphonates mess with the quality of bone by reducing the activity of osteoclasts. osteoclasts are there for the purpose of removing bad bone to make way for new healthy bone to be laid down by osteoblasts. Interference with the activity of osteoclasts has a result of increasing bone density, but at a price: the bone gets sicker and sicker as it's not being replaced by healthy bone.
Enter Forteo. Forteo is a synthesized human parathyroid hormone. It was learned in the late 20'th century that slowly pulsed delivery of parathyroid hormone causes osteoblasts to become very slightly more active than their osteoclast counterparts. By "pulsed", I mean application with a low duty cycle. The drug is self administered once daily via a tiny pinprick-like injection into a fold of skin. It very briefly supplements the activity of the hormone produced by one's own parathyroid glands with essentially normal parathyroid activity for the rest of the day. (that is what is meant by "low duty cycle"
The small boost in osteoblast activity tilt the bone activity balance just enough to slowly cause new healthy bone to be added at a rate just slightly above that of the osteoclasts which function normally, removing old bone at the proper time to be removed, something that does not happen with bisphosphonates.
Forteo has been used very successfully in ther treatment of osteoporosis without the morbidity associated with bisphosphonate drugs.
It is supposedly possible for bone to be all-but dead or pseudonecrotic, but I like to be skeptical. Still, if the e considered, when possible,
ould not be harmful to attempt treatment with Forteo, if there is any possibility of it being helpful to even part of your mandible Still, if your MRONJ isn't too advanced, Forteo might even obviate the need for surgery to remove bad bone. If it was me, I would have my internist and dentist line up an endocrinologist who is comfortable working in collaboration with dentists, or who already works with one.
I definitely would not start out blindly assuming that surgery is the only treatment and must be done immediately, as some foreign dental sites have suggested.
I presume you have stopped the bisphosphonate treatment. You should consider the bisphosphonates to be an avenue never again travelled, but still need to treat the osteoporosis. Osteoporosis is not just the risk of broken bones, but can result in a number of painful conditions, can hasten reduction in your height , and can prevent (spinal or other) fusion surgeries from "taking". Again, my suggestion would be to consult with an endocrinologist who uses Forteo. No, I have no financial incentive for recommending it. I did use it myself a number of years ago. It was new back then, and expensive, and I had trouble getting insurance to remember they had agreed to pay for it, but the manufacturer would give my Dr. several 28-day sample injectors each month, and if I got there right after the drug salesgirl left her samples, I didn't have to argue with the insurance company that month.
Hi Paul,
Go see the oral maxiofacial surgeon for treatment.
This is serious...
2014 I developed a massive oral infection that began on a Wednesday evening after hours....by Thursday morning I was at the dental office waiting for them to open...one look and I was rushed in...put on antibiotics, xrays, pain killers, and given an appointment for first thing Saturday morning with the visiting oral maxiofacial surgeon...I never slept from Wednesday, nor Thursday, nor Friday...I ate every painkiller I was given, I packed by distorted face with ice, and I sat in bed with the tears rolling. in the end, I lost my teeth and the right side of my mandible.. for months I fought the infection. I had antibiotic infusions!
Osteinecrosis of the jawbone is a nightmare...I was unhappy with the treatment I had received...so I consulted with an oral maxiofacial surgeon in a much larger community...what he told me stopped me cold..
You do not recover from osteonecrosis of the jawbone...it goes dormant.
Once you have had osteonecrosis of the jawbone, any invasive mouth procedure can set the necrosis into motion again.
He said on the 1-10 scale, he put me at a 6.5...the worst case he had seen resulted in the patient losing the entire mandible. He reconstructed a mandible out of metal for her.
He told me that this damnable disease has the potential to take out the entire skull.
The numbness is nerve involvement.
Question is, is it inflamed or is it dying?
Under no circumstances should you take Forteo...I took Forteo!
Paul, the second surgeon has taught me how to live with this awful necrosis. I now have artificial teeth, straight and white, the old fashioned kind that lay in the mouth...I can not risk having the implant type put in.
I hope my awful experience helps you.
kind regards
judith
The Food and Drug Administration of the United States has slapped Forteo with a "black box" warning - its most severe alert about side effects.
Thank you Judith, I thought it was just me over thinking and worrying, I have a maxillofacial review on the 14th of this month, I have extensive pain in both jaw joints but apparently this is TMD, I've had to have a guard made because I grind my teeth all night and through the day which causes me even more pain.
No, the X-ray indicates dead bone under a wisdom tooth extraction which I was advised to have prior to zoledronic acid infusion, they went ahead with the infusion dispite my telling them that I didn't think the socket had healed.
Now I am positively lost, I have a GP (family doctor) appointment this afternoon because I was worried about the numbness
See the GP...numbness is always indicative of nerve compression.
My prayers are for you. Mine was so severe that as the bone dried it would literally fall into the floor of my mouth..little pieces, big pieces ..it was dreadful.
hugs
judith
My goodness me Judith, my sympathy to you, sounds like scary experience, one which you have soldiered through and are helping others (me) with it
I just got a little panic on and also informed the maxillofacial secretary, she is getting their clinic to call back and advise
4 weeks ago I was diagnosed with OSJ and they said we will review you in 4 weeks to see how it's progressed or changed or got better! So the review is 14th Nov which is when apparently the will assess and establish a treatment plan
Paul
I forgot to mention possible side effects in rats and humans.
During drug testing, the medicine in FORTEO caused some rats to develop a bone cancer called osteosarcoma.
The rats were exposed daily for two years from age two months on to doses that provided systemic exposures that were 3, 20, or 60 times the exposure in humans.
Tumors were not detected when mature 6-month old rats were treated with a dose that provided systemic exposure equal to 3 times the exposure in humans.
Osteosarcoma has rarely been reported in people. It also has rarely been reported in people who took FORTEO. It is not known if people who take FORTEO have a higher chance of getting osteosarcoma, or a chance that is lower, but if there is any difference in chance between those taking, and those not taking Forteo, the chance could be assumed to be higher in those taking it.
Clinical trial experience in human males and females with osteoporosis found:
"The incidence of all cause mortality was 1% in the FORTEO group and 1% in the placebo group. The incidence of serious adverse events was 16% in FORTEO patients and 19% in placebo patients. Early discontinuation due to adverse events occurred in 7% of FORTEO patients and 6% of placebo patients."
The list of those events did not include osteosarcoma
In Men and Women with Glucocorticoid-Induced Osteoporosis:
The incidence of all cause mortality was 4% in the FORTEO group and 6% in the active control group. The incidence of serious adverse events was 21% in FORTEO patients and 18% in active control patients, and included pneumonia (3% FORTEO, 1% active control). Early discontinuation because of adverse events occurred in 15% of FORTEO patients and 12% of active control patients, and included dizziness (2% FORTEO, 0% active control).
Adverse events reported at a higher incidence in the FORTEO group and with at least a 2% difference in FORTEO-treated patients compared with active control-treated patients were: nausea (14%, 7%), gastritis (7%, 3%), pneumonia (6%, 3%), dyspnea (6%, 3%), insomnia (5%, 1%), anxiety (4%, 1%), and herpes zoster (3%, 1%), respectively.The list of those events did not include osteosarcomaIf you believe that you would be at risk for osteosarcoma if you were to take Forteo and you feel that your risk would outweight possible benefit, then you should probably choose not to take Forteo.
However, if you know that you would be at risk, then you definitely should not take it.
Patients who are at increased risk for osteosarcoma include those with Paget's disease of bone or unexplained elevations of alkaline phosphatase results in a blood test, pediatric and young adult patients with open epiphyses, or prior external beam or implant radiation therapy involving the skeleton.
An interesting read
So awful, the delay!
Don't they understand the anxiety delay causes...I had thyroid cancer and was bouncing off walls with the delay.
From what I have read excision is prefered, followed by radiation, chemo, or both
Are you allowed to seek care from another provider?
hugs
judith