Jawbone Deterioration?: My grandmother... - Bone Health and O...

Bone Health and Osteoporosis UK

5,581 members2,454 posts

Jawbone Deterioration?

Februarydhill profile image
62 Replies

My grandmother has not had any fractures but she has had to have several surgeries removing dead bone from her jaw. The doctors are baffled as to why this began happening. She has never had any issues, not even so much as cavities, to now only have 4 teeth remaining on her bottom jaw. I'm trying to find out if anyone has a lawsuit with these same issues?

My apologies: my gram took Prolia injections. After which is when she began developing pain in her jaw. Which led to the. Removing her teeth and doing scrapes to remove dead bone.

Written by
Februarydhill profile image
Februarydhill
To view profiles and participate in discussions please or .
Read more about...
62 Replies
HeronNS profile image
HeronNS

You don't say what the basis of a lawsuit would be. Is she, or has she been, taking any bone medications?

Met00 profile image
Met00

Is she taking a bisphosphonate medication for osteoporosis (alendronic acid or risedronate tablets, or been having injections or infusions)? If so, although rare, jawbone deterioration is a known side effect, so doctors should not be baffled by this!

Februarydhill profile image
Februarydhill in reply to Met00

She had only done the prolia injections

Met00 profile image
Met00 in reply to Februarydhill

In the same way, doctors shouldn't be baffled by jawbone deterioration if she's been on Prolia. It sounds like the doctors don't want to admit that Prolia is the cause.

SweetTrubble profile image
SweetTrubble in reply to Met00

My prescribing doctor did not tell me about this side effect, but I am pissed (apologies) at the FDA for letting it be released. This jawbone deterioration scares the hell out of me, and, trust me, it takes a lot for that to happen given my life history. But, my doctor is acting more concerned than surprised, I think. Haven't been to see him yet since all this started happening. I will probably cry when I do see him.

Februarydhill profile image
Februarydhill in reply to SweetTrubble

My grandmas attorney said everyone who is having issues needs to call the FDA and file.complaints and request this drug be removed from shelves in order to per sue any legal actions

SweetTrubble profile image
SweetTrubble in reply to Februarydhill

Oh, wow ... I will certainly do that. It is a month since my surgery, and I am still miserable. Still looking for a lawyer when I can. Don't feel like it most days, tho'.

Thank you for the info.

Vonster25 profile image
Vonster25

Did she take prolia?

Februarydhill profile image
Februarydhill in reply to Vonster25

Yes

735eastgate profile image
735eastgate

Please tell us if she was on medication

PsychickGallery profile image
PsychickGallery

This is a known but rare side effect of taking bisphosphonate drugs for osteoporosis...please let us know what your grandmother is taking..this needs reporting to the relevant medical authorities

ImmunePoison profile image
ImmunePoison

I, too, would like to ask whether your grandmother has taken a shot of Prolia, or was she on any medications for osteoporosis or osteopenia? I took one shot of Prolia and 2+ years later, all the teeth on my upper right side are hurting. My dentist is baffled but we are waiting on a 3D x-ray to see if teeth and jaw have been affected. I know the jaw is probably o.k. right now because I had a facial MRI with contrast and the right upper jaw was fine in that. But, I am very afraid for the future because osteonecrosis of the jaw is very common with Prolia. I had such a bad reaction to the drug that I will never, ever take a shot for anything again that is supposed to last only 6 months. Heck I am still suffering at the end of 2 years. Same GI problems, diarrhea, weight loss, worsening of all allergies. If there isn't a lawsuit in the United States, there should be. The manufacturing company, Amgen, really doesn't know the long term effects of a drug which affects the immune system and endocrine system.

Februarydhill profile image
Februarydhill in reply to ImmunePoison

My grandma has been having MRI and CT. It started our with her teeth hurting and they did a root canal which lead to them removing several teeth. She did the Prolia shots. She has lost significant weight, mainly due to her mouth hurting so bad she couldnt eat.

lawdog profile image
lawdog in reply to Februarydhill

What was examined in the MRI? WHY? What was CT for? Those are expensive diagnostic measures used for bone evaliation, and many other issues. What are the results saying and who was the SPECIALIST ordering them? Did Medicare cover all that? Has she had her dentist tell her the Prolia caused all this so it is a MEDICAL condition and may be paid by Medicare. Medicare and regular medical health usually do not cover dental issues...but because my TNJ problem was medical, it was covered as a MEDICAL condition...even those darn braces. I use a bite plate still at night.

Did she take Prolia before those dental issues or after and is she being treated for osteoporosis before or now? I know she must be so angry, but before I started Forteo recommended by my rheumatologist, I wore out the telephone, internet and anyone with ears and a MD degree about Forteo, Prolia and about 3 other meds for osteoporosis?

Hate to say this, but $200-300 for the appropriate "expert? " is not high in the US. So don't feel guilty. That's her choice. There is no class action that I found in my legal research. Has she gone to an attorney? Many dealing in injury law will provide a free first visit.

I wish you the best in finding ways to help your grandmother recover from her dental and bone situation. But perhaps she might want to start searching for a dietician to help her with her meals. Cannot give you legal advice on this venue.

Februarydhill profile image
Februarydhill in reply to lawdog

Yes, she has gone to see an attorney, which is why she asked me to find out what I could to help the process along! I will certainly find out about her being able to file these charges thru Medicare. But she has paid over $11,000 out of her own pocket. I appreciate your help.

lawdog profile image
lawdog in reply to Februarydhill

Can you reply to my questions above regarding the MRI and CT scan,,,,,,that I believe is of interest to many of us......what were they for........what were the results.......and maybe Medicare will cover the whole Prolia damage if Medicare covered those tests.

Februarydhill profile image
Februarydhill in reply to lawdog

She was given a CT scan, Ultrasound and MRI bc after she had a hyperbaric session she was showing symptoms and was having a stroke. She was doing hyperbaric to help with the infection in her jaw. In Conway, Ar.

Februarydhill profile image
Februarydhill in reply to ImmunePoison

My grandma attorney is insisting that everyone who is having these issues with Prolia needs to call the FDA and directly make a complaint and request this drug be removed from shelves. In order to pursue any legal actions!

lawdog profile image
lawdog in reply to Februarydhill

Your grandmother's attorney is telling her that there is no legal action available, so isn't doing anything for her? As Medicare paid for the CT, Untra sound and MRI, there appears to be an open avenue to having Medicare pay for the enormous out of pocket she paid. Follow the money.....the attorney can examine what excuse Medicare had for not paying for her medical care early on. And Medicare can make mistakes. Then the attorney can take it from there.......how could Medicare deny care but then later pay for care related to it? There is where the attorney can help your Grandmother now.

A few years ago, I received a notice from the agency collecting Medicare money paid when it should not have. I was stunned. It was thousands of dollars, and I was very careful to keep my Medicare separate from care that workers compensation paid. Finally, to a very embarrassed young man, Medicare was reading its own codes wrong. The correct care for the code was for the annual gyn checkup women get..................He asked if I would just send a letter explaining this, it would be less embarrassing to him discussing this personal women's care, and the file would be closed.

You and your Grandmother are in my thoughts. As an attorney myself, I understand how Medicare can help, but won't unless someone pushes and hit's it with a stick........a big one. xxx

lawdog profile image
lawdog

Lawsuit? This is not the site for legal information. Afraid that says why you are interested........not a word of concern or info about your grandmother's medical history, is she treated by specialists in what areas of medicine? There is more than one cause of dental and jaw bone loss. Maybe she needs to consider the opinions of other specialists.........and the odds of an older American never having a cavity are slim.?

Februarydhill profile image
Februarydhill in reply to lawdog

I'm very concerned with her health however SHE is asking me to look into any lawsuits against this company. Info that she can take to an attorney. She has tried to go for other opinions but the Drs in Arkansas are wanting $200-300 for simple consultations when she has had to pay Thousands out of pocket for these surgeries.

Met00 profile image
Met00 in reply to Februarydhill

If you're in the US you might find it helpful to ask the same question in the American Bone Health group.

lawdog profile image
lawdog in reply to Met00

Met, I am in the US and a member of both and sometimes my comments here appear also appear there and replies from there appear here. I am in the states and am retired attorney and have controlled osteoporosis. Left a detailed comment about my sisters and me and our MDs, meds, etc on that venue recently I believe...don't know why this happens. So guess Februarydhill has heard from both......Are you in UK?

Met00 profile image
Met00 in reply to lawdog

Yes, this is a UK based group, though I know there are people from other countries in it too. If you look, it says which group the conversation appears in - I don't think it's possible to see a reply in the wrong group, because it will be linked to where the conversation is posted.

lawdog profile image
lawdog in reply to Met00

Ok, on the UK related bone health there is an incredable and knowledgable "yoga librarian", but I don't see where she has picked up on this string....let me check...also connected with woman in Australia...know when I can't sleep she is already up and in the late morning.....I sent a message to the DR in UK who had the intro/creation message in the front of this venue.....he had suceeded with others to lobby for better healthcare for UK population.....and asked how many of the 700 venues concern bone health, etc.

lawdog profile image
lawdog in reply to Februarydhill

Ok, you are in the US. What medication did your grandmother take? How advanced is her osteoporosis? Prolia has been disussed here, but was she taking it or anything related to osteoporosis?

HeronNS profile image
HeronNS in reply to Februarydhill

She took Prolia and it sounds like she doesn't any more, is that right? When she stopped taking it, was she put on a different medication, which it has been known for some time is necessary to prevent rebound osteoporosis once denosumab (Prolia) is discontinued. And what is the time frame for all this? There may be a case for negligence on the part of the doctor if her Prolia was not replaced with another therapy.

No one should be starting Prolia unless there is no alternative and they are prepared to stay on it for the rest of their lives. Personally I think it should be withdrawn from the market. It is too dangerous.

Incidentally another drug from the same company (Amgen) has been approved for use in the US, with a black box warning - Evenity (romosozumab-aqqg). So far as I know not available in UK or Europe. One of its possible side effects is death. This whole osteoporosis medication issue is horrifying and it doesn't seem to be getting better.

I don't know how one goes about setting up a class action suit and it beats me why there haven't been several against Amgen by now. There seems to be ample evidence that Prolia has backfired terribly and it's the patients who are suffering.

Februarydhill profile image
Februarydhill in reply to HeronNS

My grandma attorney is insisting that everyone who is having these issues with Prolia needs to call the FDA and directly make a complaint and request this drug be removed from shelves. In order to pursue any legal actions!

lawdog profile image
lawdog in reply to Februarydhill

I do not understand why Medicare or her private insurance did not cover the surgeries it the bone issue was a result of taking Prolia for a medical condition of osteoporosis.

SweetTrubble profile image
SweetTrubble

I had oral surgery on Sept. 13, 2019, to remove dead bone from my right upper and lower jaw, and on the upper left. I was in surgery for 2 and 1/2 hours. This has been one of the worst things I have had to endure. Believe me, I've had some doozies. I had absolutely no idea that Prolia would cause this, and putting a little blurb on the packaging is not sufficient.

Nanaedake profile image
Nanaedake in reply to SweetTrubble

How long did you take prolia and had you taken anything previously?

SweetTrubble profile image
SweetTrubble in reply to Nanaedake

Before Prolia, I had two infusions of Reclast. Then had to get off of that while I proceeded to have my teeth extracted for dentures. Had to spread that out over two years because of the bone issues. After I had healed from all of that, I was started on Prolia. That was two years ago. Big mistake. Even after one surgery, my face has changed, and not for the better. Prolia needs to be pulled from the market and restitution made to its victims. I'm fortunate because my son is helping me thru this by paying all of the 'surprises' that come up. When I woke up in recovery, I was in tears the pain was so bad. That's saying a lot because I'm pretty tough. This Prolia business has been almost more than I can take.

lawdog profile image
lawdog in reply to SweetTrubble

Because you had the surgery to remove teeth, I am wondering why you prescribing MD didn't have you speak with your dental specialist......there is a history of the Prolia having caused problem after that type of dental work.

Februarydhill profile image
Februarydhill in reply to SweetTrubble

How long were you getting these injections?

SweetTrubble profile image
SweetTrubble in reply to Februarydhill

Two years, 4 injections. I was due for another one when this happened.

lawdog profile image
lawdog in reply to SweetTrubble

Oh, am feeling terrible for you. Was there an absolute medical connection with Prolia made by experts including a periodontist ? My sisters take the Prolia without incident so far (they are in the US) They were examined by specialists to varifed they needed no dental care before their first injection. Who rx Prolia and what is that doctor saying now?

Prolia was not my doctor's choice. Forteo was for 2 years, and now generic reclast infusion anually. Sorry I am am asking so many questions, but if you are in the UK and my sisters and I are in the US, wondering if there is a difference in the Prolia RX between the two countries?

SweetTrubble profile image
SweetTrubble in reply to lawdog

I have had 4 Prolia injections over the past 4 years. I have osteoporosis and rheumatoid arthritis. I am also one of the last polio victims. I developed an abscess on my lower right jawbone in August, and had several ER docs, including a team of oral surgeons, confirm that it was caused by the Prolia. I have had surgery to remove the dead bone, and have been told I may need more surgery. Even after one surgery, my face has become disfigured. The pain this has caused has been some of the worst I have ever had, and is almost more than I can bear. By the way, I had all of my teeth pulled before I started the Prolia. I strongly uggest that your sisters do some serious research because it is a dangerous drug, and I personally believe it should have never been approved by the FDA.

I hope this helps.

Sweet Trubble

lawdog profile image
lawdog in reply to SweetTrubble

Yes, all three of us went to our respective dental specialist for a thorough exam including the xray that shows the condition of the jaw and teeth and any briges, etc. It is really pushed here to have the dental ok before even genericReclast infusion. All of us apprently have op MDs who disussed the possibility of Prolia's side effects, including dental and jaw issues. I suggested they may want to ask for Forteo, but neither of them has had a op break which seems to be the "go" buttom for Forteo. re

I just read your reply again...you have rheumatoid arthritis and osteoporosis.....so you hopefully have a rheumatologist caring for you for both, but if you do can't believe that MD didn't have you re have your teeth and jaw history and current condition before Prolia.

Wish there was one special day of the year when a form of healing fairy dust is available for you and all of us.

SweetTrubble profile image
SweetTrubble in reply to lawdog

I was aware of the Reclast issue, and my doctors both knew about my history with the other. But the Prolia was not started until my dental work was completely healed. This just has me so stunned.

lawdog profile image
lawdog in reply to SweetTrubble

I understand way you are puzzled......I am too. But maybe there is some type of changes not detectable after the dental work healed. Curious, on the other hand did Prolio HELP your OP?

SweetTrubble profile image
SweetTrubble in reply to lawdog

My doctor seemed pleased with the results. He has always been very tenacious with bone density scans, ultrasounds for my RA, full-body x-rays, MRIs. Whatever was necessary to stay on top of my RA and OP. His office was shocked when I told them about my jawbone. However, I am getting the best care possible with the entire team of oral surgeons at the medical center. I was sent there from the first ER I visited regarding the abscess. But before the abscess developed, I had been sick with a sore throat, swollen lymph nodes and fever. I wonder if that triggered the subsequent abscess. Though I know the bone loss wasn't that quick. It realky boggles the mind.

SweetTrubble profile image
SweetTrubble in reply to lawdog

I forgot to mention that I am in the U.S. But I have learned of a class action suit in Canada that settled out-of-court. Also, a class-action suit has been opened in Mexico.

Even tho' these side effects are rare, just one case is too much because of their intensity. And, like I said, this is/has been almost more than I can bear. Thank goodness I live in a city with a first class "teaching" medical center with an excellent team of oral surgeons.

HeronNS profile image
HeronNS in reply to SweetTrubble

I don't know if Prolia has been successfully sued in Canada. I believe Fosamax was. I found this, however; note the date of release - 2012!

aboutlawsuits.com/prolia-fe...

lawdog profile image
lawdog in reply to SweetTrubble

Thanks for your reply. Unfortunately even if there is a class action, those who actually siuffered the physical effects of a medication end up with very little compoensation. The class action may have thousands or more, and attorneys get their fee first, then all the legal expenses are paid, and what is left goes to the plaintiffs,

I just wish you better days and am glad you have a medical school near you as I do,,,,,,those teaching medical specialist are usually the most informed and provide very good care. :)

SweetTrubble profile image
SweetTrubble in reply to lawdog

Yes, they do. In the meantime, I won't be giving up, and I do appreciate your time.

lawdog profile image
lawdog in reply to SweetTrubble

But does it have a rheumatologist there to be included with the surgeons ' decsions; he is the bone expert for OP and the meds RX for it.

SweetTrubble profile image
SweetTrubble in reply to lawdog

No rheumatologist at the medical center where I had my surgery. But like I said, they are all aware of each other and the ongoing treatments. But I will address that issue immediately with them both.

Februarydhill profile image
Februarydhill in reply to lawdog

She is in Arkansas.

Februarydhill profile image
Februarydhill in reply to SweetTrubble

May I ask what state you had your Prolia shots done in?

SweetTrubble profile image
SweetTrubble in reply to Februarydhill

Louisiana.

Februarydhill profile image
Februarydhill in reply to SweetTrubble

My grandma attorney is insisting that everyone who is having these issues with Prolia needs to call the FDA and directly make a complaint and request this drug be removed from shelves. In order to pursue any legal actions!

Sunseaandsand profile image
Sunseaandsand

Please tell me.

How many Prolia injections your grandmother has had??

Did she have other medications for her bones??

I have had one injection and have been having terrible pain in upper teeth, it eased off for a short time and has started again.

This is very worrying.

Also reading the replies to this post is extremely disturbing.

Februarydhill profile image
Februarydhill in reply to Sunseaandsand

She had 3 over a 6mo span, has/did not taken any other medications.

lawdog profile image
lawdog in reply to Februarydhill

Whoah......how many Prolia injections in 6 months? 3? Thought Prolia is only injected every six months......please tell us what type of doctor is giving her Prolia? I bet it is not a rheumatologist and that medical specialty appears to be the expert in osteoporosis as they are the bone/hormone/diet experts. Many people don't know that. My sister's gyn is using the Prolio but only after the dental consulting/testing was done and her insurance covers. I suggested she consult with a rheumatologist to get that input.

lawdog profile image
lawdog in reply to Sunseaandsand

Did you have a thorough exam and check up BEFORE considering Prolia. It appears from the reading on this venue and the American Bone venue that there was underlying dental issues, such as an extraction, before receiving Prolio and having the pain and bone problems.

Sunseaandsand profile image
Sunseaandsand in reply to lawdog

Yes I had a full examination before the injection.

I did not have any problems at all.

The pain I am having now is intermittent but on my return to the UK I shall be arranging an appointment with my dentist for another examination, which I have every six months owing to the fact that they have said it is very important because of my being treated with these drugs.

lawdog profile image
lawdog in reply to Sunseaandsand

Perhaps you may want to consider seeing a rheumatologist who specializes in OP as well a periodontist/dentist who understands teeth and jaw issues. All I know is when a friend of ours is a periodontist practically yelled at me not to take any thing that has that chemical make up. He was that concerned about possible jaw bone damage. He had patients with dental issues taking some form of it. He calmed down when I read the chemistry of Forteo to him.

Sunseaandsand profile image
Sunseaandsand in reply to lawdog

Some years ago when I was on the ibandronate injections I ended up with so many problems, many of which were in the mouth.

I was put under the care of a maxi oral facial surgeon who told me that these treatments cause a huge problem for them.

One of the things he said was Where are we going to take bone from if you develop ONJ.

Exactly where are they going to take good bone from with osteoporosis.

Februarydhill profile image
Februarydhill in reply to Sunseaandsand

My grandma attorney is insisting that everyone who is having these issues with Prolia needs to call the FDA and directly make a complaint and request this drug be removed from shelves. In order to pursue any legal actions!

Sunseaandsand profile image
Sunseaandsand in reply to Februarydhill

I'm from the UK and have already reported it to the yellow card scheme.

I wrote a post recently urging people to report their side effects and stating the importance of doing so.

Sunseaandsand profile image
Sunseaandsand

Thank you for your reply. I hope that your grandmothers health begins to improve very soon.

Bernieisinthe profile image
Bernieisinthe

Prolia injections - Warning - you should always go to the dentist before you take Prolia.

Fix all your teeth and pull any teeth that will need it in the next year.

Than wait, while your jaw heals.

If you are already taking Prolia and need to have your teeth cleaned, fixed or pull; you should have an antibiotic . Or wait until the Prolia wears off.

.

You may also like...

Newly diagnosed and worried about treatment

I’m hoping to speak to her this week as she knew I had issues about my teeth so never mentioned what

Has anyone had dental problems 6 months after Prolia treatment ceased?

Has anyone who took a Prolia shot had dental work after the 6 mos and had a bad reaction? I had bad

Meds and osteoporosis

osteoporosis AND lost teeth. Found out those injections caused bone loss in jaw. Just had another...

Prolia and Parathyroidectomy

too much calcium in her blood and bones. My question is has anyone else on Prolia required a...

Stoma with Denosumab osteoporosis medication

intolerance and particularly with her stoma (she has had everything removed) she has no large...