Any research, novel treatment for rare Osteonecrosis, Scleroderma & Sjogrens?

Discussion in 'Dental Restoration' started by rosavictoriana, Oct 31, 2018.

  1. rosavictoriana


    Oct 31, 2018
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    I am 73 yrs. old and have several rare, very challenging health issues. I hope to find leads on a new treatment for the osteonecrosis (dead jaw bone) and how I can restore some ability to have teeth & eat. I have lost half of my upper teeth & my dental professors have almost nothing to offer. I have a partial bridge for cosmetic reasons but cannot eat with them. If this bridge breaks I was told they could not make another as my mouth continues to shrink & it is very difficult to use the instruments.

    My diet is very limited by poor ability to chew, extremely dry mouth, esophageal dysmotility and very limited liquid intake permitted because I have also developed Pulmonary Arterial Hypertension (heart & lung disease) related to the Scleroderma. I am on oxygen 24/7. Last month I lost 11 lbs without any intention. I became ill & needed nutritional intervention. I am doing much better and ready to take action! I do not think the ONJ is presently active. I do not have pain, but I think it needs to be tested.

    I have had autoimmune diseases Sclerodeorma & Sjogrens (very dry mouth & eyes) for over 15 yrs. Several teeth fell out. About 3 yrs. ago I was hoping to get implants but when extracted it was noticed I had very little blood. I was soon diagnosed with Osteonecrosis of the Jaw (ONJ) by biopsy by prof at U of CO School of Dental Medicine. My upper left jaw was scrapped & partially lost. The ONJ is related to taking bisphosphonates (bone strengthening RX) for several years and also having traumatic dental surgery. Due to my Scleroderma, my mouth has shrunk quite small & I had traumatic dental surgery 2x under anesthesia. My doctors will not pull nor drill any cavities to avoid trauma and possible spread of the ONJ.

    I use RX Prevident toothpaste, chlorhexidine gluconate w/out alcohol rinse, Nytastin for thrush, water pik & frequent cleanings.
    I found the best lozenge for dry mouth is OraCoat XyliMelts. They adhere to your mouth and are much better than Biotin. I sleep with XyliMelts under my pillow. For my very dry eyes I have custom eye drops made from my own blood plasma.

    Can anyone recommend the most advanced research, doctors, institutions or organizations fighting any of these diseases? Is stem cell therapy a viable option? Any other possible treatments? I have good professor dentists, but they do not offer much hope. I have not given up hope! I will go anywhere . . .

    Many thanks for any leads!
    rosavictoriana, Oct 31, 2018
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  2. rosavictoriana

    MattKW Verified Dentist

    Mar 18, 2018
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    Be wary of people offering stem cell solutions. There are a lot of quacks out there who will take the money of desperate people like you. I don't know of any solutions to your problems. the professors are usually on top of the newest studies, so trust them. Unfortunately, we are living longer, and problems like yours are becoming more common.
    MattKW, Oct 31, 2018
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