A FRIEND OF MINE WHO IS RETIRED IN ITALY HAS BEEN TOLD BY HER DOCTOR (AMERICAN) THAT FOSAMAX, USED OVER A LONG PERIOD OF TIME, ACTUALLY CAUSES BRITLE BONES. SHE SAID THERE IS A CLASS ACTION SUIT BREWING OVER THIS. WONDER IF ANYONE HAS HEARD ANYTHING ABOUT THIS.
This is just hearsay and needs to be backed up by facts. Doctors have varying opinions on this drug and other bisphosphonates. I questioned my endocrinologist on the "brittle bone theory" and she said she has never heard that. When doctors say something as you stated they need to back it up with research literature otherwise many people get scared out of taking a medication that may be beneficial for them.
Peggy
I do agree with Mrs pgreene as I'm on fosamax since 1994 and my bones had improved and are stable now.
It seems not to be advisable to stop my Fosamax treatement in the absence of facts and clinical evidence to having adverse effects.
Lebaron
I have heard this as well. I have heard horror stories about all these bone medications. I myself refuse to take them. It is a fact that Fosomax and actenol have law suits against them. These drugs also cause your jaw to rot. Most dentists will not touch you if you have anything wrong in your mouth. Dental work does not heal when people are on this stuff. You do a google search on side effects of osteoporosis medications and you will read a lot.!
http://www.zometalawsuit.com/brittle-bone-disease.htm
Read this !
Osteonecrosis of the jaw is very rare and occurs primarily with those taking IV bisphosphonates nor oral ones. My dentist assured me that since I have been on Fosamax for 12 years without problems with my jaw, I most likely would not develop problems.
Tootzie, in a way I feel very sorry for you because you focus on the very rare side effects of these medications instead of focusing on the benefit that can come from them. I am in several osteoporosis groups and am bombarded with the bad press all the time. However, when I looked further into it I discovered that the things people are most afraid of are very, very rare (like osteonecrosis of the jaw). I allowed others to scare me out of taking Fosamax which I have been on for 12 years with no problems and an increase in scores from -2.5 to -1.2. I finally went to my PCP, my GYN and an endocrinologist. They all assured me I would be fine to continue taking Fosamax and I have resumed my weekly dose. They all said I had a higher risk of fractures than I had risk for osteonecrosis and other problems. Tootzie, only you can judge what is right for yourself. If you don't want to take the osteoporosis meds on the market, that's fine. But please refrain from scaring other people out of taking them! As I have said, the side effects from bisphosphonates are much rarer than the risk of fracture without medication.
Peggy
Peggy
I am so glad that you made your opinion known on this board. I feel exactly the way you do, but I have not been able to put it into words as well as you did, so THANK YOU! I agree that we all have to make our own decisions and have different opinions. Negativity/paranoia is the last thing we all need as we struggle with this very complex issue of our bone health.
Marion
Peggy,
I understand what your saying. You see I worked for Dr.'s. They do not inform the patients of the risks. My Dr. looked dumbfounded when I approached him with several quesions. He even told me that I must contact him before having any dental work done. I am going by everything I have read online. I have found very few people like you that have had positive results with these medications. I have had many DR.s make very bad mistakes with myself and others. It is up to us to read as much as we can. I won't be posting on this board anymore, so you dont' have to worry about my negativity. I worked in the medical field as I said. These Dr.s are all pill pushers today. It is all about $$$$$$$$$$$$$$$
I have also worked in doctor's offices. Some doctors are good people and are there to actually help the patients. Others are in it just for the money. I am sorry that you have had bad experiences with doctors. I am fortunate that I haven't run across too many bad apples in the field although I have surely heard about them! Not all doctors are pill pushers though as I have seen some not give out medications that patients were asking for (after seeing it advertised on TV). Yes, we got free lunches from pharmaceutical reps but if the doctor didn't like the drug, he didn't give it to patients - it just sat in the closet. There's a lot of complicating factors in the medical field. Just as there are good and bad doctors, there are also good and bad patients. We need to find the right balance. I hope you are able to find a good doctor if and when you need one some day.
Peggy
Tootzie, I hope you don't leave the community because you have a different opinion. I think what we (myself included) are attempting to tell you is not to be influenced and make your decisions based on fear. I've been on Actonel since 8/01 without any side effects. I've had dental work without any problems. I think anyone with any health conditions should chat with dentists and other care providers regarding any medications. My dentist is one of many that has an interest in bone loss. When my dentist has a patient with receding gums, a dexa is suggested. I think the posts show that if you are against meds, your decision is respected. Certainly, community members are interested to discuss your concerns about any information you have heard or received. I don't know how many people you have been in contact with that are taking the drugs, but I have spoken online and offline to many people that do not have any problems with the drugs and have improved scores. I think anger at the medical industry is wasted energy and won't serve any purpose unless each of us request the free NOF material and present to doctors and other health professionals. I'm certainly giving a copy of the Safe Movement to my doctor and other doctors in the area. I think most of us can relate to your anger as we've been through the roller coaster ride of emotions. But most of us have come through realizing that the majority of the information is fear based and isn't productive for our emotional, mental or physical health. Take a step back, take a breath, and give some thought to staying on the community. There is much to gain from being a member of this community. Please don't allow yourself to lose out on having access to information from physical therapists and other health professionals; as well as community members. Sandi
Thanks for your input Sandi,
That is very kind of you. I am very negative about a lot and I don't want my negativity to make someone not take something. I have just had really bad experiences with Dr's. I first joined this goup as Tootzie Pop and deleted the account. I found myself sucked up by all this and could not stop reading. It took over my life. Then I got curious as to what everyone was saying. I rejoined as Tootzie. I am sucked up again. I know my scores are really bad. I am not sure I understand how bad. my spine is -3.8
femoral neck is -3.8 and hip is -3.5. I am angry with my Dr's as they gave me no information on anything. My pcp sent me to the rheumatologist and all she cared about was how much my insurance would pay. She told me I should have reclast but gave me no information on it. I called her office after paying 225.00 for her visit 5 times and she never returned my call till I reported her to the insurance company. I then went back to the pcp as I was told reclast was 2000 and I have a 2000 deductable. That means they pay nothing! I am just totally disgusted by it all. I have read too many things that have scared me to death and no I have not found anyone other then you that has been on these drugs for a long period of time. They also wanted to give me reclast and when I got home I discovered it should not be given when you have had any part of your thyroid removed. I am 56. I do not want to put these medications in my body the rest of my life! I have no pain no problems, I don't want them making me sick. Thanks for your input and I am glad that you are doing well. I am not sure if I will stay on this site or not. Thanks for responding!
I forgot one thing. I was diagnosed 8 yrs ago. I find it interesting that not one Dr. Told me to take Calcium and Vitamin D. Now isn't that sad? I found that out from being on this site. When I questioned my Dr. about it he said I told you to take it. I swear he never did. I would have started it immediatly. They go over my meds at every visit. Didn't they notice I was not taking it?? These are things that have turned me off to the medical profession.
Tootzie, when I was diagnosed, I wasn't told about calcium, exercise, Vitamin D or meds. I was on my own. At that time, I wasn't aware of the NOF or any online discussion groups. I think this is an ongoing process; a journey, if you will, of learning from each other. I like to think that we have an intelligent group of community members that can make their own decisions and will not be swayed by negative posts. You can think "sad" that your doctors didn't give you the information, or you can think how fortunate that you gained information from community members ..... that we have a community to share our thoughts and opinions. If you decide to leave the community, I do wish you well. Sandi
Thanks Sandi,
I am seeing my gyn tomorrow and taking my results with me. Since I have to see him anyway. Guess it won't hurt to get another opinion.
My question to you is this: If your told you should have an infusion, don't oyu think the Dr.'s have a responsibility to give information on it. I feel a good Dr will sit you down and give information and maybe even pamphlets or something.
I forgot I am very grateful from what learned on this blog. Thanks to all that have provided beneficial information!
Hi Tootsie,
I too was told when I had a bone density scan three years ago that "osteoporosis was present". at age 56. So my doctor put me on fosamax as my mother had just been diagnosed osteoporotic - at 86 years of age! She passed away last year at age 89, and not from osteo but stroke. I had been on fosamax for 16 months when I saw the bad press in Australia about the jaw decay from Fosamax (actually a friend of mine who is a VET alerted me ) - So in consultation with my GP I stopped it. ( its fair to say that only the intraveneous not the tablet is supposed to cause the decay). However I stopped it and my GP said I was too young for long term use, up to 2 years would be all she would recommend any way. When I fractured my spine in March this year (not from a fall - just doing what women do in the home) GP sent me for another BD Scan. and X ray (which didnt show fracture). The BD Scan was as close as could be to the previous one 3 years before. Fracture was not diagnosed until April when I went to Endocrinologist specialising in Osteo who sent me for MRI after he took one look at BOTH BD scans and said even three years ago my osteoporosis was as BAD as now ..- femoral -1.9 hip -4.9 and the overall score was -4.1. After the vertebroplasty to T 7 and 8 he sent me for a CT scan (including that type of BD Score (result showed neck fracture - painless luckily, AND a worse score than the DEXA - I should be 150% but am only 49%....like a 90 yr old!!This is why I had no hesitation in going on to forteo as I need to gain up to 20% more bone density and no other treatment would come close. I feel that even 3 years ago (at least in Australia) they didnt know too much about the scores and relationship to seriousness at young age...the Forteo was not available here back then anyway so perhaps its fortunate I at least can improve somewhat. He cant understand why both tests did not state that it was severe osteo!! My son fractured his spine on holiday at 22 (3 yrs ago) (lumbar) and I showed specialist his bone density score - comment on this was "osteopaena present" but the scores reflect osteoporosis according to specialist and my son has to have CT scan BD and see him ASAP. My 27 yr old son has some back trouble so he may have osteo too - we have "cupboards in our skeletons" I think in my family.. at leasts they are young enough to perhaps reverse some of it. I understand your negativity towards medicos.. there are dedicated and then the others pushed by Drug Companies in Australia just the same as you describe and one has to have faith in their doctor - or find on they can trust. Regards Aida.
Hi Tootsie,
I do hope you stay on this site. It is the varying opinions
and feelings that enrich this site. If we all agreed, there
wouldn't be anything to discuss. The negative comments about Fosomax, Actonel or Boniva and the warnings on Forteo are nothing new. We have all read them and know that we have to
decide what is appropriate for us to take. These are
difficult decisions, especially when the drug companies
minimize the risks and often even hide the really bad ones.
To balance your own risk of the deterioration of your bones
against the risk of taking these medications, that is the problem
and it scares many of us. If you are so afraid, Tootsie, then I think
this community would and should be helpful to you so that by
reading supportive and informative comments you would feel
less fearful. I know this site is helping me a lot. Idie
Your discussions have helped me enormously - I've just been "diagnosed" and can't decide to take the Actenol that has been prescribed for me after reading many web articles on its effects. Dallas docs, in my experience, do not "sit down" and talk to their patients...they have a patient load that would kill a horse...I'm lucky to get a 2-minute visit no matter what the situation...that's true with all of them. I have found a very reputable ND - doctor of nutrition - and she is doing a full workup on me so that I can have the best shot at improving my bones without meds. And that's my point - that each of us have to find our own path - we know our bodies best.
Tootzie, How was your doctor's appointment? In answer to your question, I would like doctor's to inform patients, but I think some of the best information comes from patients. Doctors can tell us the risks and benefits .... it's up to each patient to decide whether the benefit outweighs the risk.
Hi sdivas!
My Dr appoint went great. I feel for the first time since I moved to this state I saw a real Dr. One that cares! I have decided to go on actenol and estrogen. He said my bones are so bad that I will eventually break something. I also had ovaries removed at the age of 22. Thus is probably one of my problems with the severe Osteo. He took me in his office and spent a half hour with me showing me the statistics. I realize now I have to do something. I will keep you all posted as to how I progress and I thank you for all talking to me and getting me through a very difficult time. I feel as if we can become a family by giving each other tips and filling each other in. Thanks again for your responses and your encouragement to stay on the site!
To Tootzie: Re your statement that "these drugs cause your jaw to rot" I have at hand the report on Reclast research, from which I will quote: "In the postmenopausal osteoporosis trial in 7736 patients, after initiation of therapy, symptoms consistent with ONJ [osteonecrosis of the jaw] occurred in one patient treated with placebo and one patient treated with Reclast. Both cases resolved after appropriate treatment."
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