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hello. i've been on fosamax for @ 6 yrs and as of now, my deviations are as bad as they were when i first started.. any gains were obliterated after menopause. i'm way into the high fracture risk in all 3 sites. eg -3.6 for back.. etc.etc. my drs have been encouraging me to do forteo. i'm totally freaked about the bone cancer risk and have such little faith in the FDA. the drug has been in use only 3 yrs. isn't that way too short a time to see if anyone's going to develop this fatal side effect? for those who are on it, how did you make that leap? where did you go for unbiased research questions? please help me w/ this. i'm in excellent shape.. i work out, eat well.. i do all the right things. i'm strong and no pain etcetc. i feel like everything will work to keep my body from breaking, even if my bones are brittle... my muscles/ligaments, etc are strong and secure. why risk the bone cancer? i need help here. please & thank you!!
Maureen Surprised your Dr want to NOW put you on Forteo, as biophoshpantes have LONG half-life and deposit in the bones. Although your BMD of -3.6 is well past the "range" Forteo has (as I read) been usually prescribed, the added presence of biophosphantes all but negates the gain of the Forteo. Or in some cases Forteo has been used for those women unable to tolerate the other. I was just diagnosed @ age 48 with BMD of -2.1 for spine, hips acceptable. My grandmother had osteo pretty bad, my mother has been in a test program for Pfizer for last 4 yrs with her baseline @ age 65 of BMD -2.0 was I in San Diego they would accept me into the same. My GYN is recommending Forteo as my treatment since I have NOT been on any HRT for 6 yrs, nor taken any Fosomax/Actonel/Boniva, along with family history considers me a prime canditate.
I just retired, planning on stepping up my horse breeding & showing to fulltime and am to wed April -'07 (my first). Learning I might not be able to enjoy my horses as I'd like and worked since age 15 to achieve was crushing. The chance to rebuild 10-13% of my lost bone mass w/ in 6mos to maybe 18mos is encouraging.
In my reading I found that the particular strain of rat used was fed twice the level of Forteo approved for human use, for longer than allowed for human use and at that the occurance of bone cancer was very RARE!
I have found some good links to info on the net. Email me directly at: montecielo@hotmail.com if you'd like.
My appointment w/ endocronologist is in 2 wks. AS MUCH AS I HATE SHOTS I refuse to give up on my horse dreams! If I can get my BMD back up closer to where it should be then sign me up. Biophosponates DO NOT build bone, they shut down the natural decalcification process of the body thereby allowing the calficifcation process to catch up a little. You are disrupting the natural building/shedding process of your bone structure - how is this good? Forteo stimulates the calcification process, the drug half life is one hour putting your natural building process into over drive for about three hours. Think about that, weigh the gain, decide for yourself.
Sincerely, Annette "Phoenix" Kolkey Monte Cielo Ranch
Hi: I'm sorry to hear that six years of fosamax didn't help you any!! Our t-scores in the spine are the same, and I'm the poster that is taking forteo. I have to say that I didn't have any problems making the decision to take it, mainly because the mortality-morbity rate in patients with osteo scares me more than the very slight chance of getting osteosarcoma. When I read the study that Eli Lily did on rats, I had a hard time justifying the correlation between humans and rats.
The differences between the two (rats and humans) were far to great. Rats bones continue to grow throughout their lifetime where humans reach their peak at about 25-30 yrs of age. The rats were given 3-60 times the amount of teraparatide that humans get (20 mcg)daily, and where given it for 80-90% of their lifetimes where humans can only take it for 24 months. Two key factors in contracting osteosarcoma, is the dosage amount, and length of treatment, and so far no humans have contracted it from forteo, but it would explain why the rats did. There seems to be a greater risk in the population of test subjects where bone is still growing, which is why children and pregnant women can't take it, and for patients that already have some kind of bone cancer.
I have never been a fan of drug co. or the fda, but I took bisphosphonates for only 2 years and they didn't work, and the side effects were pretty bad at times. I felt I needed to try something that stimulates new bone growth,as opposed to using something that only slows bone loss or prevents fractures (actonel) because as I said, the disability/mortality rate from a fracture is more frightening to me than osteosarcoma. If you look at the mortality rate of patients with osteo, and that of osteosarcoma, the risk of dying from a fracture complication are tremendously higher than that of contracting osteosarcoma.
I'm sorry I'm being so morbid, but this is what I understand about this topic. I'm glad that your physical health sounds very good, and hopefully that will help you from sustaining a fracture, but there is no gaurantee. I've talked too many people that are 10- 15 years younger than I am (52) and they have already had over a dozen "spontaneous" fractures with t-scores like mine and yours. Some of these fractures were from sneezing, coughing, rolling over in bed, and reaching an inch to retrieve something from a kitchen drawer. I do my best to not think about these normal routines that can cause of fracture, but it doesn't help to completely ignore them either.
All of the above factored into my decision to take forteo and I have NO regrets. All you can really do is decide for yourself what the risk vs. benefits are "for you" and then go with that. I have to tell you that forteo has not caused any side effects, and it's the first med I've ever taken I can say that about. Everyone is different, so I can't say my experience will be like anyone else's, but I already know that I have bone regrowth from the forteo, at the 3 mo. mark, which is when I had a urine test for bone markers, I'm now at the 6 mo mark and hope the increases will continue. I can't have another dxa till early next year, but I'm very glad that the drs can do bone marker tests to see if the med is actually working; when I was taking actonel, I never knew what was happening until the next scan which is few and far between.
Lastly, my biggest problem in my decision, to take forteo, was factoring in the cost of the med even though I have insurance. Because forteo is a "non preferred brand name drug" the copay is $60.00 a month, but that is a whole lot less than the retail price of $600.00 and something. I've talked to others who's insurance doesn't cover it, and they certainly can't afford it. I'm lucky I have insurance that will pay for it, because if I didn't, I would be in bigger trouble.
You mentioned that the drug has only been on the market for 3 years, but I wonder how many lives it has saved in that amount of time.
Good Luck with your decision and below is a link you might like to read about forteo.
Very good Pam. Funny we responded within minutes of eachtother.
I have Blue Cross and checked to see if Forteo is on their approved list, trick is it must be prescribed by a specialist hence my appt w/ Endrochronologist. My Blue Cross PPO plan will allow by-mail pharmacy of two refills at discount rate of $415 (2 28 day injectible pens). Once I meet $2K deductible, my co-pay is $25/each pen. We will see if I get it prescribed, approved and ordered.
Did you have to go through a "training program" before using it? Or was the training simply for injectible drug use?
Hi Phoenix: I wondered what happened to you, I hadn't heard from you since the post a couple of weeks ago. I guess those horses-new hubby ? keep you real busy :0)
In my case, my doc sent me to an Eli Lily meeting at my local hospital to run through a short discussion on osteo and how to use the pen. This group meets once a month, so if you want to return for any reason, questions, injection problems you can. I only went the one time and they take you through the pen prep, which includes following the dial procedures and then injecting (water) into a rubber ball, which you repeat as many times as you want. If you didn't have the med at that point, they gave you a free pen to start your treatment, after they confirmed your drs name, address, prescription info etc. I already had it, so was kinda mad I didn't get a free one, and I can only assume it was a full 28 day supply of forteo. They also give you a travel pack with the ice packs, a dvd, booklet, newsletter, alcohol wipes and a months worth of needles.
Others I've talked to about this went through a demo at their drs office where the nurse explained it all and you could practice it. So I don't know which will apply for you.
If you've done injections before with a regular syringe, this is totally different. Since it's a premetered dose pen, all you do is attach a new needle, dial the dose, release some med to prime it, and then dial a second dose, and inject it. This may sound strange, but it's extremely easy with no measuring, and btw, the needle is 3/16 of an inch long and I think it's a 31 gauge, so it's extremely thin, you can barely feel it.
I hope there are no complications with the rx or insurance and also that the med works for you as it has me!
Supposed to be packing the house. Med issues keep distracting me. Horses fine, three are already at the ranch, only mother & filly still with me. Cannot move up to ranch until after inital Dr apts & prescription, too remote. Must get everything in order first. Let you know what happens.
well, i must say your posts have been extremely helpful. thank you. now i need to hear from the other side of the issue to get some balance. i think i'm going to try and see an MD in town who's also a holistic practitioner .. alternative med etc.. and see what he has to say. a physiatrist i have seen was negative about the forteo, saying it takes a lot more than brittle bones to cause a fracture.. folks who have spontaneous fractures may have other contributing factors.. or, of course, may not.. but he was insistent that muscles/ligaments/tendons, etc., all contribute to overall safety/strength of bones and work to decrease risks of fractures. phoenix, i'm not sure about this half life issue.. i will definitely ask my dr about it. thanks for bringing it up. again, thank you .. and hopefully responses will keep coming. the more info i have the more able i will be to make a good decision for myself. right now, i'm inclined to wait, but who knows. thanks again, ladies!
Hi Maureen: I'm glad you're going to wait to get both sides of the argument on forteo, but was wondering if you could find out from your doc what he thinks about the link between osteonecrosis of the jaw (ONJ) and fosamax also actonel, boniva etc. There are so many law suits out there now for this, I wondered what a doc thinks about it. As I understand it, most of the ONJ was caused by iv infused bisphosphonate, in people who were being treated for some other cancer in the form of chemo etc. and also most of these claims are for patients that have been on corticosteriod treatments as well. However, I have talked to several people that have ONJ, and they do not have cancer nor were they treated with long term steriods, they just took fosamax or one of the other bisphos's.
So far, out of the people taking forteo and bisphosphonates, the concerns about bisphos's seem to way out number any concern's there might be with forteo. This may be because there are NO reported incidences of bone cancer from forteo yet.
Could you find out what the doc thinks and let us know? I can't see anymore docs at this point, or I would ask a DO myself. I've asked several types of docs this question and they all have different answers. The one thing they all seem to have in common; is that once you taken bisphos's you have to be real careful with any type of invasive dental work. This is why the manufacturers of fosamax, actonel et. recommend you have all invasive dental work done before you "start" these meds.
Anyway, good luck and hope you get your answers...
wo, pam.. this is all new to me.. esp since for the past year i've had root canals up the wazoo and i'm in the middle of 3 implants.. yesterday i had a tissue transfer procedure ... i have heard absolutely nothing about this biophosphate issue. whatever, it's clearly too late for that. my teeth had been awful all my life, by the way.. not at all related to the osteop.. it's in my family unfortunately.. but they get fixed up just fine.. i had some bone grafts for the implants, and there was no problem at all w/ the quality of my bone. if/when i get this appt, i will ask about your issue. and i have to add that i spoke w/ an oncology nurse and another nurse this weekend and they both said they'd wait, wait, wait to take this synthetic parathyroid hormone for as long as possible.. they were deadset against it unless/until there is much more longevity on the drug and also felt that MAYBE if i had had a fracture it was worth considering, but not now. one thing i would want to know is how long it would take in the general population for ill effects to come about. AND how are the contributing factors to overall bone health (eg muscle strenth, etcetc) factored in to those women who DO get fractures at our bone density.
Hi Maureen: I just wanted to let you know that I don't think you have "anything" to worry about with this issue, and that's not why I brought it up.
Since you've had or are preparing for implants, then the dentist had to have evaluated the quality of your jaw bone for the implants to work. Since you have no problems, then don't give it much thought.
As I mentioned, it is "mainly" seen in patients that are being treated w/bisphos's for different types of cancer. Many of these also were receiving chemo, long term cortisone treatments before this occured for them. Also very important, was the fact that they were receiving "iv infused bisphos.." which is done at a higher dosage, more frequent, and sometimes over a long period of time.
I too have to consider some invasive dental surgery, and haven't decided what to do, because I do have the 'start' of periodontal disease, which can precipitate some problems if I was currently on Actonel, even though I read that Actonel isn't as bad as Fosamax for this problem. I was on it for a couple of years but have been off of it for six months. I just want to make sure it's no longer in my bones (actonel) before considering an extraction, if that's what I have to have. I'm hoping for a root canal instead but heard that may not work and in the end might have to have the tooth pulled.
Just thought I would ease your mind some, if that was even necessary
Behind on the postings, was away. Yes I too have heard about problems w/ dentistry & biophos. Mother's g/f had to stop taking Fosomax was creating problems with her dental care. Still jury was 50/50 - her dentist hates the stuff, her dental surgeony said it was OK. My GYN went ballistic when I said I'd not take Fosomax, claimed I was being illogical. NOT. IF I don't want to take something what is he going to do? Shoot me? But I will say no one addresses the effect of carbinated drinks on our systems - I was a one-can-a-day coke fan and went cold turkey the day I walked out of the dr office after discussing my BMD results.
So gals, what are we all being for Halloween? Tooth Fairies?
I too am exploring alternate med. Apt for reading on my holistic tests on 10/22, then endochronologist on 10/26. Will then weigh all the alternatives and come up with a program, probably a mixture of conventional and holistic treatments the bottom line is to design a routine I can & will follow. Old habits are heard to break, brittle bones are not.
I too have dental issues, all of which I have been ignoring. Need to start same place as Pam... can't deal w/ another problem right now.
Trick or treat, either way make sure it has calcium in it! Phoenix
Hello, and thanks for posting! For answers to your questions about Bisphosophonate-Associated Osteonecrosis of the Jaw, read this blog by our RA Expert Dr. Gonter. We hope you find this information helpful - check back often for more updates and information!
I hope you women will allow a man to join in your group. I've been looking for information on Forteo from users and have found darned little info available. Quite discouraging. I am a 53 year old male have have quite advanced Osteoporosis. Don't know why , as all the tests my doctor did to determine cause came back negative or inconclusive. I took Fosamax for two years following a freak boating accident when I fractured two vertabrae. My diagnosis was at that time. Upon doing a density scan after two years on Fosamax, my score was improved slightly, but not much, so my doctor prescribed FORTEO. I don't trust the FDA either, and loathe the idea of hard core drugs, but figured I had to do something as my score is -4.1 in my hip and wrist, my spine only slighty better. I've been on Forteo for about 4 months. Still too soon to tell. I suspect my doctor won't recommend another density test until one year is up. I have noticed some odd side effects using Forteo. At least, I suspect it is the drug, but can't be 100% certain. I think it makes me feel run down, but mostly, I believe it is causing some strange aches that feel like they are coming from deep inside my skeleton. Mostly in my pelvic area and legs. I wonder if it something similar to growing pains! Doubtful, I suppose, as I think growing pains are the result of elongating bones and I think Forteo only works on the interior strcture of bones, but who can be sure. It is quite discouraging that the info on the net concerning Forteo seems to be 95% drug company info, or regurgitation of that info by Osteoporosis web sites. I feel like one of those rats they tested it on! Thanks for having me. I would appreciate any input from current users, or questions from prospective users. Scott
Posts: 1 | Location: East coast | Registered: 11-20-2006
I just found this forum. Quite interesting. Was diagnosed with severe Osteoporosis at age 30. I am now 45. Have been on about everything except Forteo. Have Boniva in my cabinet, but because I've had jaw problems for 5 years, I am afraid to take it. Isn't it in the same category as Fosamax and Actonel? I've not been diagnosed with the "jaw thing" (forgot the name), but since I've had so much trouble with TMJ I am fearful! Any thoughts?
