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Where can I get help for osteonecrosis ? Where can I go?

Posted by jimiwho @jimiwho, Nov 2, 2025

I need help but dont know where to go. I will move if have to. I have recd osteoporosis injections which have csused severe effects. Look up Prolia severe side effects. I have them. Some last n some weaken. Help me please!I recd two injections of PROLIA. Severe side effects from both and pain has been horrid. My NP diagnosed me w osteonecrosis n told me it was bad, very bad! Then made a treatment plan. For pain control, antibiotics, steroids, and bone removal w jawreplacement if did not witk. Now the NP and dr decided not to treat me from
Neck up! Said wont treat me for osteonecrosis! I had to go to dentist who wd help me but cannot. He wants me to go to large institute like yours. Otologist n audiologist want me to go out of state and agree w dentist to seek help at Mayo. None of them can treat me. Refused by physician and NP to treat me from neck up. Right leg, ankle, foot, knee now hurt. Hard to stand or walk more than total of 4 hrs cumulative in a day. Have yo use rollator or cane snd drag my leg. I was on steroid oral and injections in same institution and separate podiatrist for decades. Both Achilles tendons tuptured and one tore off bone when did.. i did not hsve surgery.

Use: Tylenol, gabapentin, tramadol, hyoscamine sulfate and lidocaine. Been to pain mgmt with no recourse now but had lidocaine injectiond parallel to spine as well as had steroid injections previously. I refuse steroids now as make me hurt worse snd swell. Use lifocainr patches everywhere even on face and skull. Weak body. Had nystatin and erythromyacin at start of disgnosis of osteonecrosis. Finally some lidocaine .2% viscous which helps my mouth so can eat. During first injection was on small methylprednisolone and then off. It made bone and muscle pain worse. Sometimes feel a bit better now but never lasts. Exhausted from pain. Nauseated n headaches first 3 hrs daily. Eat soft carbs n soups and not well. This is not LIVING! I dont know.DEXASCAN. Want one but dont have someone I trust now. Hsptl is a monopoly. Has changed my records. I will move out of state if I knew where to go. I am in late 70s and I want to live!!! Soon my prescriptions will empty. I try not to use tramadol. Maybe I cd use THC or CBD. My NP n dr refuse to treat me above neck. (So, if I removed my head wd my body be well?!). They injected me, diagnosed, told me they wd help me and now wont!they refuse to treat me. They abused me so why wd I return? I went back to dentist who wants to help me No one will except told to go to you. What can I do? Ears and neckhurt as well as entire left side of face and head. One pulse pt on temple hurts too. Head hurts where have bones n worse on left.
My NP threatened to put be in mental institution when I told her the second side effects were worse pain than first and cried to her my pain was unbesrsble. I will not return to someone who abuses me. She turned the light off on me when whe left the room. The NP told me zi ed just havr to live w it as I did brfore. Another five months! She was angry!
My dentist tried to encourage me and told me he cant do the treatment. Not in this state. People have told me to go out of state and to you. I am terrified and do not feel well but worsening. What should I do? I was supposed to have 3rd shot in Sept. it is now Oct. I will take nothing now. Just trying to be csreful. See psin mgmt and then colonoscopy for pain, diasticis recti. And hernias. Sometimes I havr passed out from pain. Whst should I do? I am trying to know what I can do. Am fearful but I know people care if I can get to help. PLEASE know Prolua helps some people. I am not one. Thank you all for ideas snd best to you!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

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daisy17 | @daisy17 | Nov 21, 2025
In reply to @jimiwho "Hi, Daisy17! I need people’s comments, suggestions and care. I feel pain and lack trust now—destroyed..." + (show)
Profile picture for jimiwho @jimiwho

Hi, Daisy17! I need people’s comments, suggestions and care. I feel pain
and lack trust now—destroyed by the medical person whom I had trusted. No,
these people should help me. Instead they told me they would not treat me
from shoulders/neck up. Told me I need to go to my dentist! (So if I put
my head on a fence post and ask help from someone who cannot treat me, i
could be their patient!!!…I am fearful fir others they may harm them as
they have me. No hope. Only damage and cruelty! It makes no sense to
return to their care as they refuse me. Why would I even try? A dentist
is not able to treat me. So perhaps they wish me death. I wont go
back. Now I feel the entire entity if hospital, practice, etc. i am
unsafe. They are a monopoly also. So I need to move to another state.
As old as I am perhaps I shall go silently in my sleep.

Had a procedure which has not tyrned me well. Colonoscopy with doublr
prep. About two weeks later and still ill. Pharmacist told me to come back
in a week and if I look better might get flu shot! She said I am too pale
n coliring so bad afraid I will pass out….i wonder if there is infection in
me now as abdominal pain can be side effect if use Prolia….even prior to
first inhectiin my Vit D was 18. Amgen says shd be 50-100. They told me
to go read about it. I dont absorb vit d from food nor oral. Told me they
dont treat w injections. No matter what it seems miracles I need. I think
I should to another state. I have seen people die or in process as care is
inadequate….

Thank you for caring. I do not know what to do….If I feel better somehow I
will go to Mayo, if accepted, i dont my head on a stake n be a lost cause.

I want to be well enough to travel. I am scared. My dentist and I agree I
need to get help. I guess I cd get hus notes and a scan the NP ordered n
told me she wdnt give me MRI. I have the summary sheet where she diagnosed
osteonecrosis of my jaw.

I am tired. Not sure if I will get well if I do nothing. But do not know
what to do. Thank you for caring!!! Take care, Daisy17! The world needs
you.

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@jimiwho
Other than prayers, I don't know what I can do to help you. If the Dr who prescribed this medication for you is unwilling to help you with problems caused by side effects, at least he/she should be able to refer you to a specialist. Or does your dentist have any suggestions for a referral? Have you tried calling Amgen at the ph# I gave you earlier? Or researched any of the support groups I suggested to see if anyone else has experienced your problems so you could ask what they did to resolve their issues?

Another thought would be to contact the Attorney General in your state to see if there is anything they can do to assist you in getting your Dr to help you or refer you to another dr? It seems against the oath that doctors take: "The Hippocratic Oath is a traditional ethical pledge taken by physicians, emphasizing principles like "do no harm" and the commitment to act in the best interest of patients." If your dr prescribed a drug that caused you harm, it's unprofessional of them to abandon you when you have serious side effects that need treatment. I don't know if there are any legal remedies you can take but contacting your state Attorney General might be a start.

Another thought is to talk to the pharmacist who filled your prescription and ask if they have any guidance on steps you can take to find treatment.

I hope you have someone in your life who can help you through this. I will continue to pray for you. Please keep us posted on whether you are able to find help.

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njhornung | @normahorn | Nov 21, 2025
In reply to @daisy17 "@jimiwho Other than prayers, I don't know what I can do to help you. If the..." + (show)
Profile picture for daisy17 @daisy17

@jimiwho
Other than prayers, I don't know what I can do to help you. If the Dr who prescribed this medication for you is unwilling to help you with problems caused by side effects, at least he/she should be able to refer you to a specialist. Or does your dentist have any suggestions for a referral? Have you tried calling Amgen at the ph# I gave you earlier? Or researched any of the support groups I suggested to see if anyone else has experienced your problems so you could ask what they did to resolve their issues?

Another thought would be to contact the Attorney General in your state to see if there is anything they can do to assist you in getting your Dr to help you or refer you to another dr? It seems against the oath that doctors take: "The Hippocratic Oath is a traditional ethical pledge taken by physicians, emphasizing principles like "do no harm" and the commitment to act in the best interest of patients." If your dr prescribed a drug that caused you harm, it's unprofessional of them to abandon you when you have serious side effects that need treatment. I don't know if there are any legal remedies you can take but contacting your state Attorney General might be a start.

Another thought is to talk to the pharmacist who filled your prescription and ask if they have any guidance on steps you can take to find treatment.

I hope you have someone in your life who can help you through this. I will continue to pray for you. Please keep us posted on whether you are able to find help.

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@daisy17
Another place to contact is the State Medical Licensing Board. I did that a number of years ago and got a very fast response from the doctor,

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kfhoz | @kfhoz | Nov 22, 2025

I am sorry to hear about your experience and hope that you find the best next steps.

Thanks for posting also as other people taking or considering osteoporosis drugs can learn. I got off osteoporosis drugs and changed to HRT because of the risk of osteonecrosis and other side effects.

There is new research from this year (2025) showing that medication-related osteonecrosis of the jaw (MRONJ) is more common that previously thought. And it is a higher risk from taking denosumab, brand name Prolia, than from bisphosphonates.

However, this paper includes people taking these drugs for cancer as well as osteoporosis (OP). The risk is much worse for cancer patients, often taking higher doses of these drugs than for we with only OP.

The paper title is: "Incidence of medication-related osteonecrosis of the jaw and associated antiresorptive drugs in adult Finnish population"
Here is a link to the abstract for the paper:
https://pubmed.ncbi.nlm.nih.gov/40389539
Here is a link to the full article:
https://www.nature.com/articles/s41598-025-02225-2
For a discussion of this paper, one can search YouTube for a video titled "NEW: Study Shows Jawbone Death Risk 11X Higher Than Reported [Doctor Explains]"

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mslee56 | @mslee56 | Nov 23, 2025

I thought it was supposed to be 2 injections per year, every 6 months you get 1. I am scheduled for prolia next week. Maybe I should cancel? So sorry you are suffering.

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charlieboy | @charlieboy | Nov 24, 2025

I developed ONJ about 3 months ago. So far mild I have bone exposed. I have taking letrozole for recurrent metastatic endometrial cancer which has been in remission for 8 years. This drug effects the bones. I will be on it for 10 years. I was on fosomax for 5 years then in July had first prolia shot. I went to my dentist when I started having issues and he sent me to an oral surgeon. He will scrape the dead bone in a few weeks so gums can heal. I will have to wait on next shot for when he tells me it's OK. I will see. You may have tried an oral surgeon or there may not be one close by. I have Ben on a antibiotic mouth wash to prevent infection so far so good. At first it hurt but now it doesn't. I hope this helps and you get help

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avidreader7 | @avidreader7 | Nov 25, 2025

I am concerned about this as a future possibility for me, so I try to read up on this.
I don't have personal experience with this condition yet, but I have searched sometimes to find oral surgeons experienced treating osteonecrosis of the jaw.
I just found this doctor today. He is in Dallas, TX, Again, I do not have more info but I did want to pass this along to everybody and you can all research him further if you'd like. There is more info on ONJ, and treatments for it, on this website.
https://utswmed.org/medblog/osteonecrosis-jaw-treatment/
Dr. Thomas Schlieve, DDS MD at Oral and Maxillofacial Surgery Clinic
at UT Southwestern at Empire Plaza 2
1440 Empire Central Drive, 1st Floor
Dallas, Texas 75247 (Directions)
214-645-6936

FROM HIS BIO:
Board certified in oral and maxillofacial surgery, Dr. Schlieve joined the UT Southwestern faculty in 2016.

His clinical practice focuses on the surgical treatment of diseases of the oral cavity, head, and neck, including oral and tongue cancers; benign and malignant jaw tumors, such as ameloblastoma or osteosarcoma; salivary gland tumors; and a jaw bone disease known as osteonecrosis.
***
While ONJ can be serious, it is treatable under the care of a specialist. The average doctor or dentist may see one or two cases of this uncommon condition a decade. UT Southwestern dentistry and oral surgery specialists have become a national referral center for ONJ, treating about 150 patients with this complication each year.

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nycmusic | @nycmusic | Nov 25, 2025
In reply to @charlieboy "I developed ONJ about 3 months ago. So far mild I have bone exposed. I have..." + (show)
Profile picture for charlieboy @charlieboy

I developed ONJ about 3 months ago. So far mild I have bone exposed. I have taking letrozole for recurrent metastatic endometrial cancer which has been in remission for 8 years. This drug effects the bones. I will be on it for 10 years. I was on fosomax for 5 years then in July had first prolia shot. I went to my dentist when I started having issues and he sent me to an oral surgeon. He will scrape the dead bone in a few weeks so gums can heal. I will have to wait on next shot for when he tells me it's OK. I will see. You may have tried an oral surgeon or there may not be one close by. I have Ben on a antibiotic mouth wash to prevent infection so far so good. At first it hurt but now it doesn't. I hope this helps and you get help

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@charlieboy. Some cancer treatments affect bones, and some OP meds affect the jawbones…..hope you get relief.

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