Experiences with

Necrosis

I was receiving Xgeva when they spotted something they thought was possible necrosis in my left jaw. Told me to quit Xgeva. I stopped Xgeva for 2 years. Now they want me back on it. I visited an oral surgeon who told me the spot was definitely not necrosis. With that I can restart Xgeva.

I thought this article was quite a useful summary of all the things to do/not do to optimise dental health and lessen need for interventions that might increase risk of bone necrosis particularly whilst on bone strengtheners. https://www.theguardian.com/lifeandstyle/2024/oct/31/experts-dentists-22-quick-easy-ways-to-care-for-your-teeth

Is there any medication that doesn’t have the risk causing jaw necrosis? That is all I keep hearing about and my dentist referred me to a periodontist and said I will have my teeth checked every 3 months, is this typical? TIA

I have been on Xgeva for about 3 years. Now my dentist says that I have osteonecrosis of the jaw because a piece of dead bone was found on my lower jaw. The piece of bone was removed and the hole is not closing up. What do I do? Any advise?

4 plus years on Zometa so getting a check up for necrosis to be on the safe side. One of the members of my oncology team who I see about every other appointment finally for about the 3rd time bringing it up with me I agreed best to get a dental check for any signs of jaw necrosis.

Had a thorough dental examination and no sign of infection or necrosis (from Zometa). I’m taking cocodamol but it’s not enough. Any similar experiences out there and any suggestions of causes and treatment?

The thermal energy from the water vapor induces cellular apoptosis and tissue necrosis, leading to a reduction in prostate volume and alleviation of obstructive urinary symptoms. Has anyone here had this treatment or planning to enroll in a clinical trial?

Quite unexpectedly 2 weeks ago after 10 days of painful walking, necrosis of the head of my right femur (about 50% necrotic) was diagnosed and I'll need a hip replacment within the next few weeks, despite the increased risk as an ET patient of thrombosis or haemorrhage.

Because I have a history of teeth problems, I am really scared of the drugs that can cause necrosis of the jaw. I would appreciate hearing from anyone who has developed this. I have had pmr for 9 years and am on 8 mg. Of prednisone. I have had 8 fractures and in 2022 lost 4inches in height.

If there was tissue necrosis or "capsule" in penis, would it still get erect like it does?

I am so conflicted because I have to get off or reduce Pred because of the Avascular necrosis, hypertension and diabetes. Thank you so much for being there. X

It was only one treatment in November of 2023, but it left me with brain lesions (areas of necrosis on the brain) . In late December of 2023, I began having difficulty walking. In March of 2024 I had what was classified as a seizure. In May, I had trouble with controlling my right foot.

for the growth and maintenance of bone; (2) greatly improves wound healing; (3) beneficially impacts the body's use of estrogen, testosterone, and vitamin D; (4) boosts magnesium absorption; (5) reduces levels of inflammatory biomarkers, such as high-sensitivity C-reactive protein (hs-CRP) and tumor necrosis

This is known as soft-tissue necrosis. NSS is an acute necrotizing form of neutrophilic dermatosis that not only causes skin lesions, the most common symptom of Sweet’s syndrome, but also affects the deeper tissues and causes soft-tissue necrosis.

I am concerned about long term side effects- specifically necrosis of the jaw. I am interested in any one who has experience with these treatments and any views related to which treatment may be more desirable . Thank you in advance for any advise

Last week I had a follow up brain MRI to check if the growing spots were necrosis or cancer. The spots in question were necrosis!

The possibility of jaw necrosis scares me. At some point I will likely need additional extraction(s). Even if I stop Prolia now, the increased risk for necrosis will extend fir some time into future. has anyone dealt with this issue?

Straight to white under the nails and fingertips, it then progressed straight from that to black dots which were the start of necrosis. By this time, she couldn't use her hands at all.

We had no idea what we were dealing with and though her fingertips were ischaemic with some necrosis they were saved with 5 days emergency iloprost. Fast forward 6 months, she looks healed though still wears gloves and woollen stockings 24 hours in UK now which is c.20degrees C .

Explaining to me the risks of Jaw Bone Necrosis, a very serious risk with life threatening potential. I have been on Alendronic Acid since July 2023, 1 tablet weekly. Now I’m off them, at least until early May 2024, when my tooth extraction is now planned to be done.