Pam
What a fabulous interview. You and Dr. Schneider provided so much information. I think I will need to come back and go over it again as there was just too much to digest in one sitting. But I certainly learned a lot about what to look for and how amazing that this drug stays in your bones for up to 10 years so even if you stop taking it, you are still at risk, maybe for years.
Thanks for providing this information.
Eileen
Hi Eileen thanks so much! We realized this was long, but the topic is so very important that I just couldn't edit it at all - something just wouldn't let me.
Dr. Shchneider has been such a great advocate for these patients with this type of fracture I don't know what we'd do without her. Since her injury, she has dedicated herself to this cause and in helping those find a safe harbor to talk, learn and exchange incredibly important research, comraderie and contacts for this horrible drug reaction.
These drugs cause other problems, as you know, so this is just one of them, but at least we have someone dedicated enough to help steer these patients through these troubled waters with surgery, recovery and regaining an active lifestyle.
Thanks again for taking the time to read about Dr. Schneider! She deserves all the credit!
You have outdone yourself Pam!
Thank you as always for all your hard work to give us the best information possible.
This has been a real eye-opener...it makes you wonder how many other people experienced this serious side effect to this medication.
I hope everyone reads your interview....they need to know.
I can't thank you enough MM and I'm glad you were able to learn from this horrific accident Dr. Schneider sustained. As she mentioned, there has been so many stats bandied about regarding how many people this has happened to, that we felt it very important to give our readers the true figures on how many have this happen, and the 1 in 500 is a much larger group than any of the studies have erroneously shown.
This isn't a small group of people by any means, and we hope this will help to get the true facts out on this, where in the past the figures have been miscalculated with incorrect denominators for the stats totals.
Thanks so much for stopping by and please tell your readers about this as well so we can help as many as possible prevent this from happening to them.
Thank you so much for publishing this interview and making it available to the public. Dr. Schnieder is a woman I call "Friend" because I am part of her support group. We are sisters and brothers in sharing pain and trying to educate "the world," about the dangers of long-term use of bisphosphonates.
I suffered two complete femur fractures, a broken lumbar vetebrae and then after being off Fosamax for two-plus years, metatarsal fractures, which are still in the 7th month of trying to heal. It took two surgeries to get my left femur to heal.
My complete fractures and lumbar fracture happened within a three month time. There was no trauma involved with either incident, but the pain is that which you never forget or want to experience more than once. I gave birth to three full-term bouncing baby boys and never screamed like I did when my femurs snapped! I would do anything to try and prevent other men and women from experiencing the pain, trauma and long rehab involved with these fractures.
I hope women who read this share it with friends and family who are "reaching that age" where doctors want to put them on a drug for prevention. We all need to be our own good healt advocates and stop thinking that there is a doctor-god or magic pill to make us live longer or better!
Thanks again!
Vicki S.
Hi Vicki, I'm so glad one of Dr. Schneiders patients could join us! I'm so sorry you had 2 of these fractures, a metatarsal and lumbar what a horrible experience. Are you doing better now?
I'm glad you have Dr. Schneider to help you and I totally understand why you feel she is your sister, she is the most compassionate doctor and I truly appreciate all she's done for so many who've gone through this terrible experience.
I've had 6 fragility fractures of the spine and I know the pain doesn't compare to a femur frax, but I do understand some of it, especially being laid up for over a year. Back when mine occured I wasn't on a BP but I did take Actonel after these happened and I just hope I don't have to worry about the half-life of a drug I took for almost 2 years.
I sure hope we hear from more of your group, and maybe John, so we can get a better idea of how you all are doing with this, and thank you if you were one of those that testified before the FDA. You are our hero's!
Take Care and speedy recovery to you!
Pam
Thanks again Pam!
My broken foot is healed 80 percent after 10 months! A verylong time for healing, but so far at least, I have avoided having the foot screwed back together! Our group has added another man and is over 140 members. Too many, but yet it is just the "tip of the iceburg" of victims out there who are blaming themselves for a fractured femur, not realizing the connection. Please keep spreading the word!!
Best always,
Vicki
Hey Vicki, good to hear from you! I'm so glad your foot is almost healed, but 10 months is an unusually long time. I'm happy they don't have to use screws to put it back together!
I'll keep spreading the word on this topic and shining a light on the fact that doctors do rx bisphosphonates (BPs) for osteopenia all the time! I wish this weren't the case, but unfortunately it is. Also the FDA approved biennial Reclast for this very purpose in 2009.
It would be nice to hear from some of the other members, in your group, so we can raise the discussion on this for those who aren't familiar with it. Dr. Schneider is a god-send, as I mentioned in the interview, and I don't know what we'd do without her. I hate to think about her experience with her femur fracture from taking BPs with only an osteopenia dx, but at least she's spread heading this movement for all to become knowledgeable.
I know this is just the tip of the iceberg since the figures used to calculate the total numbers of patients with this problem was FLAWED. If you don't start with accurate numbers you won't ever get the true picture of how many have suffered with this. Then there's the problem with miscoding at the ER and radiologists thinking this is a "traditional hip frax."
Keep on speaking out about this so we all can hear it and I'll do the same. I hope you heal now and your foot is better real soon. We also have to remember that the bones in the foot are another off-shoot of this femur frax problem. So if anyone has broken a foot, from minimal trauma, and also has intense groin/femur pain, at the same time, have it checked to see if the femur is involved.
Thanks for stopping by Vicki and best of luck to you and all your members and the wonderful Dr. Jennifer Schneider who had the courage to form the group you're in and to speak before the FDA.
If anyone wants to read Dr. Schneider's testimony before the FDA, here's the link. To find her words within that very long PDF, put her name in the search box and it will pull up what she testified to on September 9, 2011 in Maryland.
Take Care and come back any time we'd love to hear from you or any other members!
Hello Again Pam!
I have sent a message to our group for more people to come and join this forum and comment. I hope you hear from them soon. When we are silent, no one learns, no matter what the subject is, but this is not just a bone saver type forum, it is a life saver with more women and men learning the dangers of taking these drugs without good cause.
Thanks again!
Vicki
Thanks, Pam, for this great interview - it's the most detailed information I've seen, other than a clinical study I read on Fosamax some time ago. I took that drug for several years until I started hearing about these side affects. I was diagnosed with osteopenia, too, and now I feel even better about having discontinued it. My doctor had me try Evista and I think it did help, but I discontinued it because I gained weight with it - I also found a blog where many other women wrote about that same side effect. Weight gain is not as serious as breaking a bone, but still, it's not good, overall, especially if you struggle with it, anyway. My latest bone scan indicated that medication is not needed, so I'm not exactly sure what changed - my bones or my doctor's attitude toward these drugs! At least, she wasn't insistent that I stay on the Fosamax when I wanted to stop it; I have a feeling she had also heard all the controversy about it.
Thanks again for the great post - this is a real "keeper."
Hi Judy, thanks for your kind remarks! I'm so glad your t-scores have improved and you don't need these drugs. I also took Evista, after I finished 2 years of Forteo, and my t-scores did remain in the osteopenia range after having been low when I started the Forteo and experiencing previous fractures. My score was -3.6 with 7 spinal fraxs and the Forteo put me back at -1.6 in one year, which is almost hard to believe. Now 4 years post Forteo I'm at -2.3 which isn't as good as -1.6 but hey it's still in the osteopenia range and NO new fraxs!
So happy for you Judy and so glad you stopped by and enjoyed Dr. Schneider's wonderful way of explaining how these drugs work and the possible ramifications some may face with them.
Take Care
I remember when the bisphosphonate class of medications were first introduced, Fosamax (alendronate) lead the way. But I really do not remember anyone recommending them for the treatment of osteopenia. So I wonder how some doctors got lead astray.
At the time, years ago, I attended a comprehensive Orthopedic Review course sponsered by UC Davis Medical Center. One of the lectures covered the topic of osteoporosis. In no point during the lecture was a bisphosphonate recommended for the treatment of osteopenia. Which leads me to my point, doctors are obligated to a lifetime of learning. Attending conferences and review courses sponsored by reputable teaching facilities is imperative to stay up to date.
How do you know if your doctor is up to date on the latest information about a particular topic? A doctor should keep a list of Continuing Medical Education Courses attended for anyone like patients or the State Medical Board to review. Ask to see it.
Now, my question to all the primary care physicians who treat everything under the sun is: How can you possibly stay up to date within all the topics that you try to treat? I say it is impossible and a primary reason why this "gate-keeper" system of healthcare fails. It relies too heavily on primary/generalists who are reluctant to refer to specialists. A specialist is better able to stay current in the one particular area that he/she specializes in.
We have all been hearded into primary care corral where mistakes are more likely to be made.
Had Dr. Schneider seen a bone specialist early, I would bet she would have never been started on a bisphosphonate in the first place and none of this would have happened to her. From what I gathered, Dr. Schneider made her own treatment decision based on her feeling that " I wanted to whatever I could to keep my bones healthy". That does not sound like a decision based on medical evidence or a consensus recommendation from a speciality board.
The lesson to be learned here is that doctors are easily lead astray by what Pharma is feeding them especially when they are out of their own area of expertise. Patients should demand more specialty care in order to avoid unneccessary medications and risks.
Dr. Christina Lasich, MD
Hi Dr. Lasich, thanks for joining us! It is so important to keep track of our Drs continuing education, but I wonder how many would actually fill us in on what they do.
I know quite a few specialist (bone and mineral metabolism) Drs who will still order BPs for osteopenia, and especially, if the patients wants to go that route.
It didn't help, though, when the FDA approved biennial Reclast for the prevention of osteoporosis and Drs continued or started to rx Reclast for osteopenia. I suppose the patient "may" have had other risk factors, as seen in our FRAX score, but I know too many who hadn't had previous fragility fraxs, RA, steriod use etc., that were put on this anyway.
Then we have those ladies with breast cancer on AIs and were put on BPs to prevent further distruction to the bone or to prevent bone mets. I have a family member that happened to and she was put on Zometa (zolendronic acid) aka Reclast, but at a much higher and more frequent dose and she now has osteonecrosis of the jaw.
I don't know how to get Drs from rxing these types of meds, but they continue to do so even at the specialty level (bone and mineral metabolism) Endo etc.
Thanks for adding your thoughts and I hope Dr. Schneider can jump in too!
I agree with Dr. Lasich that it is really hard for doctors to keep up to date on every subject and every medication. Some read medical journals more diligently than others. Many physicians rely in part on pharmaceutical companies and their drug reps to keep them informed about new drugs. The FDA reviews and approves written material that the drug company provides (such as patient package inserts). The drug companies are supposed to study the side effects of their drug both before and after it is approved by the FDA, and to inform physicians of any problems. That is part of how physicians become informed when new problems develop.
First of all, I challenge each and every doctor to place his/her curricuculum vitae complete with CME list on his/her website (or accessible to patients) like I have done.
Second, I challenge each and every doctor who prescribes bisphosphonates for the routine "treatment" of osteopenia to back that up with some level 1 medical evidence. What the FDA says means less and less as cooperate Pharma pushes drugs through. The buck stops (to a certain extent) in the peer review, major journals. From 1992 to present time, the bisphosphonate drugs have always been intended for the treatment of osteoporosis not osteopenia.
Third, when it comes to the prevention of metastatic disease from prostate cancer, breast cancer, thyroid cancer etc, that is a totally separate ball game. And yes, bisphosphonates will be used aggressively to prevent metastatic bone disease from cancer, in order to save or prolong a life. That is well supported in the medical literature.
And let us not forget the pushy patients who see a drug on television or in the news media or latest magazine. Doctors hear it all the time... "I want this drug". "I do not want to end up like my mother.. I want this drug". Many doctors will cave to that kind of pressure rather than risk losing business.
Just like the Viox (a type of anti-inflammatory medication pulled from the market years ago) controversy, the bisphosphonate problems we have today are partly to blame on doctors who are lead astray and become overzealous with the prescription pad.
OK... I will get off my soup box before I fall off. :)
Dr. Christina Lasich, MD
Thanks Dr. Lasich and Schneider for your astute comments. I really do hope that Drs will take Dr. L's challenge and provide this info on circulum vitae; how great would that be!
I also hope that there aren't a ton of physicians that take what the FDA says about new drug protocols and runs with them. I would love to know how many patients with osteopenia were prescribed biennial Reclast when it was approved for osteopenia in 2009.
The other problem we have is with insurance. Many with HMOs have to wait several months to see a specialist, and if you are seeing your Dr. for osteopenia/osteoporosis there isn't a huge push to send these patients to a specialist and some HMO insurances wouldn't cover it anyway. So it is a great idea, but not all that practical, even though I sure wish it was.
I guess I'm lucky because my Drs are constantly sending me to specialists to the point that it almost drives me crazy because I am seeing so many Drs, but I'd much prefer a specialist if my pcp feels out of her depth or field of expertise. We need to fix our insurance model too, or this will never work for most, since specialists are mostly out-of-reach for so many, due to insurance restrictions. And when we talk about these options it really upsets those who can't access this type of treatment, and "that" is very sad. It reminds me of the thousands upon thousands who can't afford Forteo and their insurance doesn't cover it.
Thanks again for all the GREAT ideas. And Chris stay on your soapbox!
Doctors are led astray by Big Pharma and the dollars involoved. The company promoted the BP treatment for Osteopenia!!!! Where were you when this was happening? Were you in the medical field then?
Dr. Schneider was advised for treatment of "the non-disease" Osteopenia as have been thousands upon thousands of men and women--who now are suffereing horrible, painful and in some cases fatal femur and other bone fractures and subsequent surgeries.
When those drugs are pushed on patients who have been scared into thinking they are in immediate danger of crumbling, that would be like giving drugs to people with gray hair to prevent baldness!! Shame on your for assuming anything but. Please do further research and expand your knowledge in this area so you do not find yourself on the persucuting end of treating patients!
thank you for this excellent interview, Pam and Dr. Schneider! I learned a lot of things I didn't know before and will keep this in my reference file.
Thanks Lene, for taking the time to read the interview and for stopping by! I'm sure Dr. Schneider appreciates it as well. Please be sure to notifiy anyone you might know who's taken these drugs for on-going periods, of the possible dangers they may pose with atypical fractures. We need to remember it's all bisphosphonates and not just Fosamax also (Actonel and Actonel with Ca +D, Boniva, Reclast/Zometa, Aclasta, Aredia, generic Fosamax (alendronate), Skelid, Didronel, Fosamax with D and Atelvia).
Take Care and Happy Holidays!
Dear Pam:
I have just recently joined Dr. Schneider's support group and have found people there whose experiences are very similar to my own. I suffered an AFF last
February after just stepping down onto my porch. I know my femur broke in
mid-air and THEN I fell. The pain was indeed excruciating. I did not learn for
several months that I had suffered an AFF. My orthopaedic specialist just said,
"S___t happens!" It certainly did! After my surgery I developed a fat embolism and was in the ICU for 10 days, 5 of those days on life support.
I took Actonel for 6 years for osteopenia. If I hadn't taken this drug I would never have had one of these terrible fractures. I am only 50 years old. I have not been able to work since that day. My fracture has not yet healed and my other leg has had a suspicious burning sensation for the last few weeks. I am seeing an orthopaedic specialist in 2 weeks who is experienced with AFFs. I hope nothing happens to me before I see him.
There must be many more AFF victims who will never be heard from. It was only when I did research on femur fractures on-line that I learned what had really happened to me.
I am so glad I found Dr. Schneider's support group. I don't feel alone in this dreadful situation. I hope that people learn from my story to be informed and to be stubbornly proactive. If they are not, they will just slip, literally, between the cracks, as I almost did.
Sincerely, Susan from Canada.
Hi Susan! Thanks for joining us! Wow...mid-air frax!!! You are one tough cookie! I hope you told the ortho what's what 
I'm so sorry to hear about your AFF and embolism; you must have been petrified on life support. ICU for 10 days is horrible. I can't remember how many times I've heard about fractures happening before the fall/impact.
6 years on Actonel for osteopenia; why am I NOT surprised. I'm glad you found Dr. Schneider's group so you have others to talk to and get support. We must do all we can to spread this information on AFFs and hopefully the numbers will go down.
Please take care of yourself; and I hope the burning sensation is not a sign of another femur frax. Let us know-okay? We'll do all we can to keep others and yourself from falling between the cracks on these terrible outcomes from BPs.
Thanks so much for joining us and do keep on visiting; we'd love to hear how you, or any other members, are doing.
Pam
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Dear Pam,
This is fabulous! That is all that I can say! Yet another breakthrough in the knowledge you are providing the world through your illuminating posts!
Thank you,
Yours,
Priya
Thanks Priya, I have to say you are the most loyal and true reader and I really appreciate it; you have NO idea how much!
I hope you enjoyed the interview and learned what to watch for with atypical femur fractures so you can inform your friends if any are taking "any" of the bisphosphonates.
Thanks for your support and constant appreciation.
Pam