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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,814
    • Most Online (within 30 mins)
      7,748

    ColbyBowlin
    Newest Member
    ColbyBowlin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.