Prednisone, Prolia, osteoporosis, dental work

[irishponies]

I wrote this as a response to someone else on the page but it may help other folks that have these issues.

Yes, my primary care physician said the Prolia injections for osteoporosis frequently cause jaw necrosis. They "forgot" to mention that when they gave me the first shot. I'll never take it again. With oral biphosphates, they can be stopped but once you have the Prolia injection, it's in you! (Yes, I'm on long term Prednisone.)

I found out about the Prolia side effect of jaw necrosis when I went to the dentist for a regular cleaning, she found a cavity but cannot repair it without medical clearance from my primary care physician. The primary care doctor said NO medical clearance for dental work due to having had Prolia injection! Prolia's own web site has warnings of jaw necrosis as a side effect.

I researched Prolia's web site and then appealed the primary care physician's decision of no medical clearance because the injection was 10 months ago. It is supposed to be repeated in 6 months but the doctor "forgot" so I never received the next shot. The Prolia web site said that 10 months time from the last injection would be "safe" to avoid jaw necrosis from "normal" dental work.

I presented to the primary care physician that an extraction of the tooth (due to NOT filling the cavity) that the Prolia web site stated the filling had a lesser chance of jaw necrosis than an extraction, which had an increased risk of jaw necrosis.

I finally got my medical clearance from the primary care physician to fill one cavity. It took me 3 months and lots of documentation, phone calls, and emails. I have an appointment this Monday to fix the cavity.

For the first time in my life, I am excited to go to the dentist. My wallet will not be, but I am.

[PMRpro]

Jaw necrosis is a factor in invasive dental procedures - extractions for example, NOT fillings or cleaning. And jaw necrosis is also a "rare" occurrence with Prolia, more common with its use in cancer patients.

[irishponies in reply to PMRpro]

I believe I mentioned several times in my post that the primary care physician did NOT want to hear me when I explained that JAW NECROSIS IS A RARE SIDE EFFECT OF PROLIA IN INVASIVE DENTAL PROCEDURES NOT A CLEANING NOR A FILLING. NOR did he want to read the research I prepared. He said, "NO, YOU CANNOT HAVE DENTAL WORK BECAUSE YOU HAVE HAD PROLIA." He did NOT want to hear anything I said. I wrote everything down, research, web site, links, etc, and emailed ALL of it to him so now it is documented in my medical record. Please realize it is the PRIMARY CARE PHYSICIAN and NOT me that DOES NOT understand the difference of Prolia induced jaw necrosis between "RARE OCCURENCE" in invasive procedures and NOT in normal cleaning and a filling. I did NOT research any other biphosphates because I am focused on getting my tooth's cavity repaired and I am dealing with a primary care physician's whose sole focus is PROLIA and JAW NECROSIS. This endeavor started 06/03/22 and he did not send the medical release form to the dentist until 08/29/22. That dentist is NO LONGER INTERESTED in treating me due to repeated phone calls and emails and her frustration with the PCP. No, I did not ask for my x-rays. I want to start new and hopefully get SIMPLE FILLING. I have had find another dentist, paid another $45.00 on top of the $150.00 spent with the old dentist for a new evaluation/x-rays and DID NOT LIST PROLIA on my med list. I also changed primary care physicians because I cannot trust the other one to do anything. I have been examined by the new PCP. I have NO IDEA if she will sign the medical release form. I am waiting to hear back from her. I have a 8/7 appt. to HOPEFULLY FILL A SIMPLE CAVITY that was found 06/03! I believe I have made an extraordinary effort to get dental work completed. I COMPLETELY understand Prolia can "RARELY CAUSE JAW NECROSIS", the former PCP does not/refuses to understand it. I have been very cognizant of my dental care my entire life and have NEVER HAD TO DEAL WITH SUCH RIDICULOUS CRAZINESS.

[PMRpro in reply to irishponies]

I have no idea why you have directed such a tirade at me. I did not suggest at any point that YOU didn't know the difference.

[irishponies in reply to PMRpro]

The "tirade" was because you answered my post without reading what I wrote (the research on Prolia, jaw necrosis, etc.) by telling me what I already wrote about jaw necrosis. I get it! I get it! It is a rare side effect from Prolia and usually BUT not always from invasive dental work. It can happen spontaneously and from fillings. I spent an incredible amount of time researching the Prolia site. You reiterated what I wrote as if I had not written it several times. I am frustrated by no one reading what is written, just like a doctor that does not listen to the patient, and telling me what I already know and cannot get the doctors to understand was just too much. To me, your response was something I would receive from one of the doctors that didn't read what I wrote but answered anyway. By the way, I still as of 09/26/22, do NOT HAVE medical clearance for dental work. I have written MORE emails to doctors, changed dentists, changed primary care physicians, spent close to $350.00, and still NO ONE WILL SIGN THE FORM. CRAZY.

[vivdunstan Volunteer]

Glad you are getting your tooth fixed! It does sound as though you've had to go through some hoops to get it fixed though. That isn't the case in the UK, where in these circumstances normally a treatment for bone necrosis risk patients would either be suitable to do at the usual dentist (e.g. if a filling or a root canal), or in the risk of necrosis (in particular extractions or implants, not fillings or root canals) the patient would be referred to the NHS dental hospital for safer treatment there.

Jaw necrosis is a *rare* side effect of Prolia, or as we know it better in the UK Denosumab. Equally bisphosphonates like Alendronic Acid that I am on can in rare cases causes bone necrosis. Rare cases, but we do know of people in the Vasculitis UK group who have developed bone necrosis after dental treatment while on bisphosphonates. So it is a concern. Especially for dentists.

I'm actually quite angry that patients being put on these drugs are not better informed. It is a bug bear of mine! Anyone being put on an osteoporosis drug that can in rare cases cause bone necrosis should have an urgent dental checkup before starting, and also have any necessary invasive dental work (extractions or implants) done before starting too. But medics don't adequately inform patients of the risk. Which can cause problems later. And dentists often have to pick up the pieces.

My own dentist when I was due to start on Alendronic Acid joked that maybe he should pull all my teeth then, beforehand, to make things easier. Haha! He is a charmer But so far I've been able to have treatment in the dentist as usual, including fillings and root canals. For a dental extraction or implants I would be referred to the local NHS dental hospital

Anyway hope you feel better soon!

[Red-head44 in reply to vivdunstan]

morning Viv

Thank you so much for all this vital information - no we are not advised. I’ve been on Alendronic Acid for 6.5 yrs and due to go onto daily injections for osteoporosis (I can’t remember the name of it but will be asking urgent questions). I am in the middle of dental work and there was an issue with my jaw and a lump developed and had to have urgent root canal to clear poison and have had a temp filling for months and dentists sent off x-rays to hospital but no feedback yet. I’m due to go back on the 7th Oct! Will now be doing lots of research!!!!! Xx

[PMRpro in reply to Red-head44]

Daily injections is probably Forteo?

[alybill in reply to vivdunstan]

I was given an annual infusion once a year for three years. The hospital consultant asked me if I had any dental problems and was I routinely visiting a dentist, which I replied yes. The drug is never repeated and I have since found out Dentists hate the drug. I have EGPA since 2008 and due to the high doses and duration on steroids I have picked up other conditions along the way. I had a NHS dentist while we lived in Essex. We moved to Suffolk and registered with a local dentist, all the dentists left this practice and we were informed a very part-time dentist was coming and only doing private patients. I have a pension and can’t afford to pay for private treatment. I phoned all the dentists all around the area I live and no one was taking on NHS patients. An article in our free magazine talked about a dentists who was taking on NHS patients I contacted them and had to fill in a comprehensive form on line and then I was told to wait. A few months went by and I was given an appointment and I duly went to the dentist, I was due to see a young lady dentist but she was running late and so I was passed to another dentist, a young man. I bobbed back and forth got some filings and a cap, on my last visit he tells me he is leaving and going to work in the Isle of White (unsure of spelling) I had already an appointment for January23 so I thought I would be ok. I received an email from the practice to say my dentist had left and I would have to see another dentist privately.

I have sent two emails asking if I could not be seen by another NHS dentist in the practice I am awaiting a reply, in fact I have been waiting since September.

I am saddened with the decline of our NHS which was once admired by the rest of the world. I can’t afford a private dentist fees and the private funding taken out doesn’t cover for the first year and only allows two routine visits with dentists two visits with hygienist and an X-ray. I would welcome advice from members of this site.

[irishponies in reply to alybill]

Hi, I completely appreciate your dilemma. It should have been mentioned that ALL my dental experience is out of pocket, private dentists. Though I am on US Social Security and Disability, no dental work is not covered. It is quite bizarre, in my opinion, that dental is not covered. My cavity adventure took 5.2 MONTHS and several hundred dollars just to fill 2 cavities. The money is NOT related to payment for services, it is to pay for repeated dentist visits completely due to NO DOCTOR would sign the medical clearance DUE TO the PROLIA INJECTION in OCTOBER 2021. The cavities were filled in October 2022 and that added another $350 to the ridiculous "Get the medical clearance form signed" dental saga. Lesson learned: medications will no longer be told to doctors/dentists/pharmacists due to the incredible hassle to get services. The services are performed in the end, the medications are not changed, but your pocketbook is a whole lot lighter.