Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Osteoporosis Meds Fosamax And Actonel May Be Harmful


YankeeDB

Recommended Posts

YankeeDB Contributor

I have osteoporosis secondary to celiac disease and I know this is a common problem for us celiacs which is why I want to share this topic.

My neighbor has taken Fosamax orally for 10 years and appears to have osteonecrosis of the jaw (bone death of the jaw) following dental surgery.

Guess what--the lawyers are circling on this emerging finding. Is this the next HRT? The next Vioxx?

Try a search with these terms: bisphosphonates jaw osteonecrosis.

After researching this quite a bit (especially on Google Scholar where the scientific research articles can be found more easily), I decided to go off Actonel after 1.5 years. Here's why:

1. Bisphosphonate meds (Fosamax, Actonel, Boniva, and some others administered intravenously) have not been studied long enough (over 10 years) for the long-term side effects to be determined. The jaw problem is currently deemed by many doctors to be "rare" but how do they know it will be rare after patients have been on it 12, 15 or 20 years? Some doctors say it is more common with the IV versions of the drug but there have been cases with the oral meds too, including cases where no invasive dental surgery was involved.

2. Osteoporosis diagnoses are now based on low bone density measurements, usually from a DEXA scan, not from the presence of or known likelihood of a fracture. People with high density bones can have low-impact fractures; people with low density bones sometimes don't have fractures. (I was in an ATV accident last December, at least a medium-impact event, and did NOT fracture after landing on my hip)

3. There is no universal standard of what bone density should be. Different DEXA machines yield different results.

4. Bisphosphonates work by inhibiting the resorption or normal breakdown of bone (via osteoclasts) not by stimulating the creation of new bone (via osteoblasts). Thus, as time goes on, yes, the bone may get denser but it is also OLDER tissue--that is, there is still no normal turnover of bone as happens in a younger person. Is this "old" bone resistant to fractures -- maybe for a while--FIVE years; after that, no one knows and some scientists think the bone is MORE prone to fracture, more brittle. Makes sense, doesn't it? Older cell, less flexible cell. After all, there's a reason bone is broken down and built up by the body in a healthy young adult. There is some indication that after taking these meds for a while, if the bone does break, the normal remodelling process the body goes through to heal the fracture not work.

5. Some doctors say that if you avoid dental surgery, you will be OK. But, who knows if you might need an extraction sometime in the future? Why do so many seniors wear dentures? If we live long enough, loss of teeth may be inevitable.

6. I've discovered some alternative treatments that may be worthwhile: electromagnetic therapy and supplements with strontium. (Try a search using: strontium osteoporosis.) Also, I'm going to get serious about exercising again....

See book: The Myth of Osteoporosis.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

I had read about these meds causing osteonecrosis, when just doing general medical research (a hobby of mine) a couple of years ago, and thought it looked very frightening. What you are saying is very interesting. I hadn't heard that different machines yield different results for bone density scans, I was assuming that there is a definite standard.

I will have to check out the book. My bone density scan claims that my bones are great. I hope it's true! I was tested to have somewhat low levels of vitamin D, and assumed that as a result my calcium and magnesium were likely to be low as well. So, I am supplementing all three now, in the hope that I will be fine.

Interesting, that you didn't break any bones with that fall you had. If you'd believe what doctors say, you should

have broken something for sure.

plantime Contributor

Another drug with horrible side effects. Any wonder that I have no interest in a drug to treat celiac disease?

ravenwoodglass Mentor
I have osteoporosis secondary to celiac disease and I know this is a common problem for us celiacs which is why I want to share this topic.

My neighbor has taken Fosamax orally for 10 years and appears to have osteonecrosis of the jaw (bone death of the jaw) following dental surgery.

Guess what--the lawyers are circling on this emerging finding. Is this the next HRT? The next Vioxx?

Try a search with these terms: bisphosphonates jaw osteonecrosis.

After researching this quite a bit (especially on Google Scholar where the scientific research articles can be found more easily), I decided to go off Actonel after 1.5 years. Here's why:

1. Bisphosphonate meds (Fosamax, Actonel, Boniva, and some others administered intravenously) have not been studied long enough (over 10 years) for the long-term side effects to be determined. The jaw problem is currently deemed by many doctors to be "rare" but how do they know it will be rare after patients have been on it 12, 15 or 20 years? Some doctors say it is more common with the IV versions of the drug but there have been cases with the oral meds too, including cases where no invasive dental surgery was involved.

2. Osteoporosis diagnoses are now based on low bone density measurements, usually from a DEXA scan, not from the presence of or known likelihood of a fracture. People with high density bones can have low-impact fractures; people with low density bones sometimes don't have fractures. (I was in an ATV accident last December, at least a medium-impact event, and did NOT fracture after landing on my hip)

3. There is no universal standard of what bone density should be. Different DEXA machines yield different results.

4. Bisphosphonates work by inhibiting the resorption or normal breakdown of bone (via osteoclasts) not by stimulating the creation of new bone (via osteoblasts). Thus, as time goes on, yes, the bone may get denser but it is also OLDER tissue--that is, there is still no normal turnover of bone as happens in a younger person. Is this "old" bone resistant to fractures -- maybe for a while--FIVE years; after that, no one knows and some scientists think the bone is MORE prone to fracture, more brittle. Makes sense, doesn't it? Older cell, less flexible cell. After all, there's a reason bone is broken down and built up by the body in a healthy young adult. There is some indication that after taking these meds for a while, if the bone does break, the normal remodelling process the body goes through to heal the fracture not work.

5. Some doctors say that if you avoid dental surgery, you will be OK. But, who knows if you might need an extraction sometime in the future? Why do so many seniors wear dentures? If we live long enough, loss of teeth may be inevitable.

6. I've discovered some alternative treatments that may be worthwhile: electromagnetic therapy and supplements with strontium. (Try a search using: strontium osteoporosis.) Also, I'm going to get serious about exercising again....

See book: The Myth of Osteoporosis.

Thanks for posting this, I knew I was making the right choice when I refused these meds. If they would just diagnose us in childhood like they should we wouldn't have to worry about bone loss let alone take a toxic drug to counteract it.

Deej Newbie

I tried this stuff for a few days and it made me so terribly ill I quit. Now I'm glad I did.

jerseyangel Proficient
Thanks for posting this, I knew I was making the right choice when I refused these meds. If they would just diagnose us in childhood like they should we wouldn't have to worry about bone loss let alone take a toxic drug to counteract it.

Amen Ravenwood!

YankeeDB Contributor

Thank you for replying to my post. For those of you with osteoporosis, what treatment measures are you following now?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

Also, get your calcium from a source other than dairy! Too much protien makes absorption of calcium impossible. We are dairy free and eat lg dark green salads made with spinach every night. You will absorb MORE calcium by going dairy free.

jerseyangel Proficient

Jnkmnky is right--also, almonds are a good source! I eat no dairy, but get my calcium from foods. I also take calcium lactate. Despite the name, it has no dairy in it!

Deej Newbie

Weight bearing exercise is what my doc prescribed. Yeah, right, with my health.. <_<

mamaw Community Regular

I stopped also!!!

mamaw

Ursa Major Collaborator
Weight bearing exercise is what my doc prescribed. Yeah, right, with my health.. <_<

Try the exercises in this site, they are for seniors and people with disabilities, and easy but effective. Open Original Shared Link

bluestar Newbie

Also, celiacs often are osteoporotic because they don't absorb calcium and/or vit d. So, the bifosphonates don't have the "tools to work with"! That is different from an osteoporotic individual who has calcium and vit d but does not assimilate it into the bone matrix!

Bluestar

ravenwoodglass Mentor
Weight bearing exercise is what my doc prescribed. Yeah, right, with my health.. <_<

Is there any place close to you that has a pool? Also did your doctor give you a referral to a physical therapist? I had many similar problems before I was diagnosed celiac and the PT was able to give me excercises I could actually do. I consider myself very lucky to have had my neuropathies and fibro resolve with extreme strictness on the diet but before they did I felt like you do. Yea excercise, right I can barely move. If you can do it swimming or the PT might help at least a bit.

  • 3 weeks later...
helixwnc Newbie

This is very interesting. I have been exploring the issue of calcium deficiency over the last several months, and have an order to go for a DEXA scan, but hadn't yet. The only treatment they would give at this point would be one of those meds and weight bearing exercise. I have set a goal of exercising daily. Forget the pills! What a horrible thing to have happen to someone! Thank you again for this thread!

  • 2 years later...
mar4ela Newbie
I have osteoporosis secondary to celiac disease and I know this is a common problem for us celiacs which is why I want to share this topic.

My neighbor has taken Open Original Shared Link orally for 10 years and appears to have osteonecrosis of the jaw (bone death of the jaw) following dental surgery.

Guess what--the lawyers are circling on this emerging finding. Is this the next HRT? The next Vioxx?

Try a search with these terms: bisphosphonates jaw osteonecrosis.

After researching this quite a bit (especially on Google Scholar where the scientific research articles can be found more easily), I decided to go off Actonel after 1.5 years. Here's why:

1. Bisphosphonate meds (Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, and some others administered intravenously) have not been studied long enough (over 10 years) for the long-term side effects to be determined. The jaw problem is currently deemed by many doctors to be "rare" but how do they know it will be rare after patients have been on it 12, 15 or 20 years? Some doctors say it is more common with the IV versions of the drug but there have been cases with the oral meds too, including cases where no invasive dental surgery was involved.

2. Osteoporosis diagnoses are now based on low bone density measurements, usually from a DEXA scan, not from the presence of or known likelihood of a fracture. People with high density bones can have low-impact fractures; people with low density bones sometimes don't have fractures. (I was in an ATV accident last December, at least a medium-impact event, and did NOT fracture after landing on my hip)

3. There is no universal standard of what bone density should be. Different DEXA machines yield different results.

4. Bisphosphonates work by inhibiting the resorption or normal breakdown of bone (via osteoclasts) not by stimulating the creation of new bone (via osteoblasts). Thus, as time goes on, yes, the bone may get denser but it is also OLDER tissue--that is, there is still no normal turnover of bone as happens in a younger person. Is this "old" bone resistant to fractures -- maybe for a while--FIVE years; after that, no one knows and some scientists think the bone is MORE prone to fracture, more brittle. Makes sense, doesn't it? Older cell, less flexible cell. After all, there's a reason bone is broken down and built up by the body in a healthy young adult. There is some indication that after taking these meds for a while, if the bone does break, the normal remodelling process the body goes through to heal the fracture not work.

5. Some doctors say that if you avoid dental surgery, you will be OK. But, who knows if you might need an extraction sometime in the future? Why do so many seniors wear dentures? If we live long enough, loss of teeth may be inevitable.

6. I've discovered some alternative treatments that may be worthwhile: electromagnetic therapy and supplements with strontium. (Try a search using: strontium osteoporosis.) Also, I'm going to get serious about exercising again....

See book: The Myth of Osteoporosis.

Thanks for this post, my mother searched such info abou fosamax

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.