ThinBones
02-08-2005, 10:18 PM
I went to see my Endo. today. I do trust her as she is at the top of her field in a big medical center but...... I had all the bloodwork possible done previously. The good news was everything was completely normal. I guess that is good although if my parathyroid was off I guess that would be an easier fix. Anyway, I was shocked to find out I had two thoracic fractures. Not new and she said they were "silent" fractures. No pain, but that may not last. Now she suggested Forteo which we had talked about. I am not in menopause yet but she is worried about the loss when I do go through it. Maybe a year of Forteo to give me some base. I don't know what to do....I know this is familial, my Mom suffered and had severe osteo. with pain that I certainly don't want to endure. How she did it I don't know. The MD also said I probably never had good bone structure. I was told at 20 I had the bones of an 80 year old woman which I just discounted as no one even talked about osteoporosis then. Anyone on Forteo long enough to see a positive result? Hard for me to start something when I have no recent fractures or pain but I know this can be a silent disease for many years..... Thanks....
Sponsor
taape
02-08-2005, 11:39 PM
Sounds like you it's a good thing that you went to a top specialist at a major medical center. I was in total shock also after my first bone density test with zero pain or indication that I had a problem only to find out how severe it was. Did your doctor suggest that Forteo would work even if someone wasn't post menopausal? I kind of wondered about that myself. My tests showed the beginning of menopause but they gave it to me anyways. I had a bone density test yesterday and when I get my results I'll let you know if there was improvement. How are fractures diagnosed? Do small fractures show up on regular xrays or CTscans? The fractures aren't causing pain which is positive although I wonder why the doctors always say these eventually will. Maybe because the fractures get bigger or something. I hope you can decide what to do soon.
snowmelts
02-09-2005, 12:53 AM
The way I understand the silent fractures is.. well.. for the effect of visability.. a Hot Dog for example. Hold up a hot dog by one end and think of it as the Spine. Now slice it a few times horizonally. You can see it begin to bend. More slices = more bending. Those slices are like silent hairline fractures onthe spine. Once your spine bends it causes pull and stress on the surounding muscles and nerves. The results are rather painful.
I don't know anything about Forteo, but I wish you good health.
I don't know anything about Forteo, but I wish you good health.
Travel
02-09-2005, 02:41 PM
I think that I want to research Forteo more before I make a decision to go with it. So far I have learned that the reason it is taken for only two years is that they simply do not know what will happen after that two years. To me that means anything from continued chance for bone cancer, to having your bones lose the benefits gained during the two years and going back to their previous condition.
I wonder why a drug is on the market that is not proven in so many ways. Are they using the American public as their test lab? Right now, for me, I don't believe I want to take it. However, if I was continuously having broken bones all over my body, I would probably do it. My scores from the bone scans are not really high, but I have had several "compression fractures" of the spine. I am right now recovering from one.
As with all things the decision is individual and each of us know how much chance we want to take for the hoped result. I certainly wish all good luck.
I wonder why a drug is on the market that is not proven in so many ways. Are they using the American public as their test lab? Right now, for me, I don't believe I want to take it. However, if I was continuously having broken bones all over my body, I would probably do it. My scores from the bone scans are not really high, but I have had several "compression fractures" of the spine. I am right now recovering from one.
As with all things the decision is individual and each of us know how much chance we want to take for the hoped result. I certainly wish all good luck.
ThinBones
02-09-2005, 11:39 PM
As for using forteo premenopausal, I believe it works the same, it is after menopause that you really can lose more bone mass, quicker. I do have reservations about this drug, any drug for that matter, but there is still some unknown with it. I know I would probably not even consider it but losing my Mom due to osteo had a big impact on me. I took care of her in my home her last 2 1/2 years, she had almost constant pain, morphine every 4 hours. It scares me to death and is really what is driving me. I am built just like her with the horrible t-scores already. I am due to have my next scan in March so I will see what that says, compared to last year. So hard for all of us to know what to do.......
peregrine
02-10-2005, 08:12 AM
I wonder why a drug is on the market that is not proven in so many ways. Are they using the American public as their test lab?
$$$$$$$$$$$$$$$$$$$$$$$$$$$$
$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Aleta145
02-10-2005, 12:53 PM
I wonder why a drug is on the market that is not proven in so many ways. Are they using the American public as their test lab?
Yes, they are. What is the alternative? More animal testing? Testing on poor people in Third World countries? At least we are made aware of the risks via the Black Box warning, and can choose whether or not the benefits outweigh the risks. Should a new drug NOT be made available to people who have no other option, even if they are willing to take the risk?
Yes, they are. What is the alternative? More animal testing? Testing on poor people in Third World countries? At least we are made aware of the risks via the Black Box warning, and can choose whether or not the benefits outweigh the risks. Should a new drug NOT be made available to people who have no other option, even if they are willing to take the risk?
Travel
02-10-2005, 01:29 PM
Are you satisfied with only the black box warning? Wouldn't you like to have information beyond that, such as the reason for using the drug for a mandatory limited amount of time? Don't you think you should be fully informed before injecting the drug into your body? Don't you ask yourself WHY they are not giving you more detailed information?
I said in my previous message that if I were having broken bones on a regular basis I might reconsider my decision. It is an individual choice.
I said in my previous message that if I were having broken bones on a regular basis I might reconsider my decision. It is an individual choice.
Aleta145
02-10-2005, 02:51 PM
Are you satisfied with only the black box warning? Wouldn't you like to have information beyond that, such as the reason for using the drug for a mandatory limited amount of time? Don't you think you should be fully informed before injecting the drug into your body? Don't you ask yourself WHY they are not giving you more detailed information?
I said in my previous message that if I were having broken bones on a regular basis I might reconsider my decision. It is an individual choice.
I'm not trying to be argumentative here, Travel. :D Just making a general philosophical point. I will never be a candidate for Forteo myself. I don't know what information is routinely given by doctors, but I read that a medication guide with more detail must accompany each prescription. I would imagine that is going to be the most up-to-date info. Since you are doing the research (for which I commend you) why not talk to your pharmacist about it?
The Black Box warning goes like this: (I hope it's okay to post this)
WARNING
In male and female rats, teriparatide caused an increase in the incidence of osteosarcoma (a malignant bone tumor) that was dependent on dose and treatment duration. The effect was observed at systemic exposures to teriparatide ranging from 3 to 60 times the exposure in humans given a 20-mcg dose. Because of the uncertain relevance of the rat osteosarcoma finding to humans, teriparatide should be prescribed only to patients for whom the potential benefits are considered to outweigh the potential risk. Teriparatide should not be prescribed for patients who are at increased baseline risk for osteosarcoma (including those with Paget's disease of bone or unexplained elevations of alkaline phosphatase, open epiphyses, or prior radiation therapy involving the skeleton) ( see WARNINGS and PRECAUTIONS , Carcinogenesis ).
Treatment choices can be so tough. I myself just finished 5 years on a drug which has the known side-effects of blood clots and uterine cancer, but which I believe has protected me from the cancer I'm most vulnerable to. I made the decision with my eyes wide open, and with the knowledge that ultimately I (and not my doctors) am responsible for my own health. I wish you and everyone here the best of luck, whatever you should decide! :)
I said in my previous message that if I were having broken bones on a regular basis I might reconsider my decision. It is an individual choice.
I'm not trying to be argumentative here, Travel. :D Just making a general philosophical point. I will never be a candidate for Forteo myself. I don't know what information is routinely given by doctors, but I read that a medication guide with more detail must accompany each prescription. I would imagine that is going to be the most up-to-date info. Since you are doing the research (for which I commend you) why not talk to your pharmacist about it?
The Black Box warning goes like this: (I hope it's okay to post this)
WARNING
In male and female rats, teriparatide caused an increase in the incidence of osteosarcoma (a malignant bone tumor) that was dependent on dose and treatment duration. The effect was observed at systemic exposures to teriparatide ranging from 3 to 60 times the exposure in humans given a 20-mcg dose. Because of the uncertain relevance of the rat osteosarcoma finding to humans, teriparatide should be prescribed only to patients for whom the potential benefits are considered to outweigh the potential risk. Teriparatide should not be prescribed for patients who are at increased baseline risk for osteosarcoma (including those with Paget's disease of bone or unexplained elevations of alkaline phosphatase, open epiphyses, or prior radiation therapy involving the skeleton) ( see WARNINGS and PRECAUTIONS , Carcinogenesis ).
Treatment choices can be so tough. I myself just finished 5 years on a drug which has the known side-effects of blood clots and uterine cancer, but which I believe has protected me from the cancer I'm most vulnerable to. I made the decision with my eyes wide open, and with the knowledge that ultimately I (and not my doctors) am responsible for my own health. I wish you and everyone here the best of luck, whatever you should decide! :)
Travel
02-10-2005, 06:40 PM
Aleta, I, too, hoped this was just a discussion on the pros and cons. If I seemed argumentative, I apologize. I have a natural inclination to challenge the medical profession a little bit...lol. So many times I have felt like they thought it was more their business than mine what was going on in my body. I would certainly hope I didn't plant seeds of doubt in the minds of those who have decided to use the drug and that it really does help them to get back their lives.
I am glad you found a drug that protected you from the cancer. You are a brave soul just to face the uncertainty and to make informed decisions about your treatment. Congratulations, and I wish you all the luck in the world.
I am glad you found a drug that protected you from the cancer. You are a brave soul just to face the uncertainty and to make informed decisions about your treatment. Congratulations, and I wish you all the luck in the world.
taape
02-10-2005, 11:21 PM
I don't think that using Forteo is much different that any other new medication or treatment which has recently been FDA approved after clinical trials. That's not to say just because clinical trials were done and it was FDA approved means that it's safe or will benefit everyone. More detailed information is provided to the patients with the medication, at least I got it. However, medication effects everyone different and some people may suffer the side effects and other people don't. Just much thoughts about making choices whether to take a medication or not that has a black box warning.
Oldbones
02-11-2005, 04:55 AM
Each Forteo pen comes with three inserts. One of the inserts has the black box warning and tons of information. I've done a lot of research and talked to doctors about this drug. Most of you know about my fractures .... so that played a big part in me deciding to start the injections. Also, it eases my mind (to some extent) that there have been no cases of osteosarcoma in humans who have used Forteo or in primates during and after testing. Rats have a different bone structure than humans. They continue growing throughout their lives unlike humans. Adolescents who are still growing cannot take Forteo because the risk of osteosarcoma would be greater.
I don't know if I would have started Forteo if I had known my bones were so bad but had not had fractures. Now though, I look back (hindsight) and wish I would have had a DEXA scan and started on it before the fractures. It's a tough decision to make because not everyone with weak, brittle bones will suffer a fracture in their 50's or 60's. However, a person is very lucky if they are in the 80-90 age group and haven't had a fracture. The prognosis isn't very good for hip fractures at that age. It's a hard decision to make but I do know that my bone density has improved since starting Forteo. I can actually go shopping and not worry about my feet fracturing. I was starting to get a real phobia about shopping and fractures because they all happened while shopping or right after. Talk about shop till you drop.
Oldbones
I don't know if I would have started Forteo if I had known my bones were so bad but had not had fractures. Now though, I look back (hindsight) and wish I would have had a DEXA scan and started on it before the fractures. It's a tough decision to make because not everyone with weak, brittle bones will suffer a fracture in their 50's or 60's. However, a person is very lucky if they are in the 80-90 age group and haven't had a fracture. The prognosis isn't very good for hip fractures at that age. It's a hard decision to make but I do know that my bone density has improved since starting Forteo. I can actually go shopping and not worry about my feet fracturing. I was starting to get a real phobia about shopping and fractures because they all happened while shopping or right after. Talk about shop till you drop.
Oldbones
Travel
02-11-2005, 12:10 PM
Thank you, Oldbones. Your message answered some quesions for me. I am still hesitant to start the injections but have not really made a final decision. One thing that makes me hesitate is that I had a bad fall about five years ago that caused the first fracture of the upper spine. It would have caused a fracture for even a person with normal bones. My bone scan readings, tho in the danger zone, are not extreme. This makes me wonder if it is the original fracture that keeps getting "upset", or actually new fractures from osteoporosis. I think I am going to request copies of the reports on the bone scans because the "technician" just doesn't want to tell me much. A CT a couple of years ago for another reason showed "a compression fracture".
Thanks again. I am very glad it is working for you. Thank heavens, there is something that will help people who have problems like yours.
Thanks again. I am very glad it is working for you. Thank heavens, there is something that will help people who have problems like yours.
CrohnieToo
02-17-2005, 12:24 PM
Are you satisfied with only the black box warning? Wouldn't you like to have information beyond that, such as the reason for using the drug for a mandatory limited amount of time? Don't you think you should be fully informed before injecting the drug into your body? Don't you ask yourself WHY they are not giving you more detailed information?
I said in my previous message that if I were having broken bones on a regular basis I might reconsider my decision. It is an individual choice.
Goshes, Travel, that information you mention is available! At least as much as they know from the studies and clinical trials. It is only approved for two years because that is the longest clinical trials period done prior to approval. Unfortunately, in this day and age, it is up to us to ask the questions and seek out the answers. Most of the answers or a good share of them are readily available on the internet w/o much effort to search them out. And there is always your trusty ole pharmacist to ask as well as our doctors.
One of my favorite search sites for further information, is the National Library of Medicine's PubMed where I can search for and find real medical journal abstracts. Are you famliar with it?
<http://www.ncbi.nlm.nih.gov/PubMed/> :jester:
I said in my previous message that if I were having broken bones on a regular basis I might reconsider my decision. It is an individual choice.
Goshes, Travel, that information you mention is available! At least as much as they know from the studies and clinical trials. It is only approved for two years because that is the longest clinical trials period done prior to approval. Unfortunately, in this day and age, it is up to us to ask the questions and seek out the answers. Most of the answers or a good share of them are readily available on the internet w/o much effort to search them out. And there is always your trusty ole pharmacist to ask as well as our doctors.
One of my favorite search sites for further information, is the National Library of Medicine's PubMed where I can search for and find real medical journal abstracts. Are you famliar with it?
<http://www.ncbi.nlm.nih.gov/PubMed/> :jester: