Crystalclear
11-18-2000, 05:58 PM
I have osteoporosis in the lumbar spine. I have tried Fosamax and had stomach pain, Miacalcin (nasal spray) and had strange emotional side effects such as depression, anxiety so stopped both of those drugs. My Doctor has now prescribed Actonel 5mg. I am to take two pills one day per week. I have not taken it long enough as yet to know the outcome, but I'm hoping I can continue with the Actonel as it is one dose per week and seems like the best drug I've tried as yet. I wonder if anyone else had tried this drug and what results they have had.
Sponsor
karenj62
01-18-2001, 08:52 AM
To CrystalClear,
I have been taking Actonel for about 2 months, but am thinking of discontinuing. The heartburn is relatively mild, especially if you take as directed, but I just don't like the idea of pills & drugs when there are more natural options out there to build bone strength. Also, on the Actonel packet info, it states the woman should be postmenopausal. Don't know why, but I'm sure that's stated for a reason. I'm not in that category yet, so another reason for discontinuing. Good Luck with your experience.
I have been taking Actonel for about 2 months, but am thinking of discontinuing. The heartburn is relatively mild, especially if you take as directed, but I just don't like the idea of pills & drugs when there are more natural options out there to build bone strength. Also, on the Actonel packet info, it states the woman should be postmenopausal. Don't know why, but I'm sure that's stated for a reason. I'm not in that category yet, so another reason for discontinuing. Good Luck with your experience.
Crystalclear
01-18-2001, 01:35 PM
Hi KarenJ62,
I am still doing fine with the Actonel after 2 months of use one day per week. I, too, do not like to take any unnecessary medications, but I am postmenopausal, take estrogen, have been taking calcium supplements,magnesium and zinc for years and still found that I have Osteoporosis. I lead a healthy life and eat properly on a good diet. I would not want to become crippled with spinal fractures so will continue to take the Actonel unless I have some sort of adverse effects. If I were a young woman I may feel differently about the idea of taking a prescription mediction for the rest of my life, but at age 68 I want to live the remainder of my years as physically able and healthy as possible. I now walk 2 miles per day, garden, hike in the local mountains, work part-time and feel great. My main complaint abut prescription drugs is the burden of the high prices. I no longer have prescription coverage for the medications I take and it is a struggle to pay for the Actonel as it is very expensive. Good luck to you in whatever you decide to do to protect your bones. Post again with any new information you may have about alternative treatments.
I am still doing fine with the Actonel after 2 months of use one day per week. I, too, do not like to take any unnecessary medications, but I am postmenopausal, take estrogen, have been taking calcium supplements,magnesium and zinc for years and still found that I have Osteoporosis. I lead a healthy life and eat properly on a good diet. I would not want to become crippled with spinal fractures so will continue to take the Actonel unless I have some sort of adverse effects. If I were a young woman I may feel differently about the idea of taking a prescription mediction for the rest of my life, but at age 68 I want to live the remainder of my years as physically able and healthy as possible. I now walk 2 miles per day, garden, hike in the local mountains, work part-time and feel great. My main complaint abut prescription drugs is the burden of the high prices. I no longer have prescription coverage for the medications I take and it is a struggle to pay for the Actonel as it is very expensive. Good luck to you in whatever you decide to do to protect your bones. Post again with any new information you may have about alternative treatments.
audxmike
10-15-2006, 06:10 AM
I have just started on Actonel. I have been diagnosed with osteoporosis
with a compressed fracture in my vertebrae, I'm 51 yrs old and a Fitness Instructor. I was not told that you had to be post menopause in order to take Actenol, as I am not yet post menopause.
I hope truly that it works. I'll do anything I can to prevent further damage to my body. We are fortunate
to be able to have these new drugs - I know nothing is perfect - but perhaps in time it will work. Remember, as you read too probably, these drugs take time to work. I'm not prodrug but in this case of possibly more
fractures - we need to try these medications and give it a chance to work!
Audrey:angel:
with a compressed fracture in my vertebrae, I'm 51 yrs old and a Fitness Instructor. I was not told that you had to be post menopause in order to take Actenol, as I am not yet post menopause.
I hope truly that it works. I'll do anything I can to prevent further damage to my body. We are fortunate
to be able to have these new drugs - I know nothing is perfect - but perhaps in time it will work. Remember, as you read too probably, these drugs take time to work. I'm not prodrug but in this case of possibly more
fractures - we need to try these medications and give it a chance to work!
Audrey:angel:
Misty800
10-15-2006, 08:38 PM
I wish you ladies luck. I took Actonel once a week for 6 weeks and ended up literally being poisoned. Never had so much pain in bones, muscles and rest of body. Caused Plantar Fasciitis in both feet and in sitting bone area. Inflammation all over my body. It has been 1 1/2 years and I am still suffering from side effects from the Actonel. I still have to take Prevacid as a result of taking Actonel. Actonel can affect ligaments in your body. Actonel can stay in the body 10-20 years. I am hoping it does not stay in mine that long.
If you start having pains of any sort, think about the Actonel, don't brush it off as maybe being something else.
If you search other posts on Actonel you will learn of others experience.
Misty
If you start having pains of any sort, think about the Actonel, don't brush it off as maybe being something else.
If you search other posts on Actonel you will learn of others experience.
Misty
Titchou
10-15-2006, 09:57 PM
Be careful on this about antibiotics. There is long list of ones you cannot take while on Actonel. I am allergic to many antibiotics and the one my doctor says he has left to give me is on the list of ones to not take. So I opted not to take the Actonel.
winston55
10-16-2006, 04:35 PM
I am a 65 year old male that has had osteoporosis for over 4 years. I have been taking Actonel 35 MG once a week for over 4 years. I have had no side effects at all. My T scores have improved a little. My hip was -2.7 now its -2.2; my spine was -2.5 now its -1.8 I walk 4 miles every day, I take Osteo Protect made my Vita Logic. It has 12 ingredients that support good bone health.
montesflus
10-16-2006, 08:31 PM
It's interesting whether drugs like Actonel, Fosomax, Boniva, and the likes, have the same side effects on men as they do on women! And I bet NO studies have been done on this, knowing the drug companies!
Although I know it's true that for the most part, it's mostly women who get osteoporosis, I also know that SOME men can get it too. Regarding side-effects of these meds, the majority of people I've come into contact with personally, as well as comments and opinions I've read on line, seem to point in the opposite direction - meaning UTTERLY HORRIBLE, oftentimes UNBEARABLE side effects! Anything from lesions in the esophogus, severe acid-reflux, shooting and stabbing bone and joint pain, stomach problems, diahharea, swelling of ankles and legs, heart palpitations and pressure in chest (often landing patients in the ER), hair loss, and dermatologic rashes over various parts of the body (just to name a few)!!
Oftentimes, osterporosis is inherited no matter how much exercise and calcium intake. Even though I was diagnosed with osteoporosis - -2.5 in hip, and -2.2 in spine, I've decided to go the natural way. I was considering taking Forteo as I prefer the way it acts on bone, but the 2 year limit puts me off and the airlines won't let me take it on trans-atlantic flights (or any flight, for that matter) and I WILL NOT give up my travel plans!!
It would be interesting to hear from other men taking these meds, and hear how they're doing. At the moment I walk (and have always walked) at least 1-2 hours a day (briskly), take calcium with vit.D, magnesium and zinc and also do weight-bearing exercise. I'm generally feeling fine and my bones aren't bothering me - hope it stays that way, hahahaha ....
TIA to all responders,
Irene
Although I know it's true that for the most part, it's mostly women who get osteoporosis, I also know that SOME men can get it too. Regarding side-effects of these meds, the majority of people I've come into contact with personally, as well as comments and opinions I've read on line, seem to point in the opposite direction - meaning UTTERLY HORRIBLE, oftentimes UNBEARABLE side effects! Anything from lesions in the esophogus, severe acid-reflux, shooting and stabbing bone and joint pain, stomach problems, diahharea, swelling of ankles and legs, heart palpitations and pressure in chest (often landing patients in the ER), hair loss, and dermatologic rashes over various parts of the body (just to name a few)!!
Oftentimes, osterporosis is inherited no matter how much exercise and calcium intake. Even though I was diagnosed with osteoporosis - -2.5 in hip, and -2.2 in spine, I've decided to go the natural way. I was considering taking Forteo as I prefer the way it acts on bone, but the 2 year limit puts me off and the airlines won't let me take it on trans-atlantic flights (or any flight, for that matter) and I WILL NOT give up my travel plans!!
It would be interesting to hear from other men taking these meds, and hear how they're doing. At the moment I walk (and have always walked) at least 1-2 hours a day (briskly), take calcium with vit.D, magnesium and zinc and also do weight-bearing exercise. I'm generally feeling fine and my bones aren't bothering me - hope it stays that way, hahahaha ....
TIA to all responders,
Irene
DesertBloom
10-16-2006, 09:15 PM
It's interesting whether drugs like Actonel, Fosomax, Boniva, and the likes, have the same side effects on men as they do on women! And I bet NO studies have been done on this, knowing the drug companies!
Hi Irene: I've talked to quite a few men with osteo, who have taken or are taking bisphosphonates, and the side effects are the same for them. Whether there have been any studies on this is anyone's guessbut I'm almost sure they have because it won't make any sense if they didn't.
Although I know it's true that for the most part, it's mostly women who get osteoporosis, I also know that SOME men can get it too. Regarding side-effects of these meds, the majority of people I've come into contact with personally, as well as comments and opinions I've read on line, seem to point in the opposite direction - meaning UTTERLY HORRIBLE, oftentimes UNBEARABLE side effects! Anything from lesions in the esophogus, severe acid-reflux, shooting and stabbing bone and joint pain, stomach problems, diahharea, swelling of ankles and legs, heart palpitations and pressure in chest (often landing patients in the ER), hair loss, and dermatologic rashes over various parts of the body (just to name a few)!!
There are men who post here, and I've also talked to several, in other groups, that now have ONJ (osteonecrosis of the jaw) which they believe is from taking Fosamax.
Oftentimes, osterporosis is inherited no matter how much exercise and calcium intake. Even though I was diagnosed with osteoporosis - -2.5 in hip, and -2.2 in spine, I've decided to go the natural way. I was considering taking Forteo as I prefer the way it acts on bone, but the 2 year limit puts me off and the airlines won't let me take it on trans-atlantic flights (or any flight, for that matter) and I WILL NOT give up my travel plans!!
I've taken cal, mag, etc, etc, "all" of my life and was always very active with sports and recreational activities, and I still got osteo. My grandmother had osteo, so I know it is in my family, and both of my brothers were recently diagnosed with osteopenia, and I believe my aunt had it before she passed. One of my brothers was warned about the side effects by his doc because he just had extensive dental work done--no implants--but a lot of extractions, and some bone removal due to periodontal disease which I also have. He was "given" the option of taking Boniva if he wants, but I think I've talked him out of it because his t-score is not too bad and I'm worried about the effects on his dental probs, which will continue for awhile. He is a complete freak when it comes to vits (takes an unbelievable amount) and has been running everyday for 20 years. The only time he missed his daily running routine was recently when he had to be hospitalized for diverticulitis, and his biggest complaint was that he blew his running record since he has never broken it before. He continues to run regardless of how he feels--sick, colds, bad weather, etc--and it drives his wife crazy, so she follows him around in the car, when she thinks it's necessary, which in turn drives him crazy while he's running.
It would be interesting to hear from other men taking these meds, and hear how they're doing. At the moment I walk (and have always walked) at least 1-2 hours a day (briskly), take calcium with vit.D, magnesium and zinc and also do weight-bearing exercise. I'm generally feeling fine and my bones aren't bothering me - hope it stays that way, hahahaha ....
I hope you continue to do well...
TIA to all responders,
Irene
Hi Irene: I've talked to quite a few men with osteo, who have taken or are taking bisphosphonates, and the side effects are the same for them. Whether there have been any studies on this is anyone's guessbut I'm almost sure they have because it won't make any sense if they didn't.
Although I know it's true that for the most part, it's mostly women who get osteoporosis, I also know that SOME men can get it too. Regarding side-effects of these meds, the majority of people I've come into contact with personally, as well as comments and opinions I've read on line, seem to point in the opposite direction - meaning UTTERLY HORRIBLE, oftentimes UNBEARABLE side effects! Anything from lesions in the esophogus, severe acid-reflux, shooting and stabbing bone and joint pain, stomach problems, diahharea, swelling of ankles and legs, heart palpitations and pressure in chest (often landing patients in the ER), hair loss, and dermatologic rashes over various parts of the body (just to name a few)!!
There are men who post here, and I've also talked to several, in other groups, that now have ONJ (osteonecrosis of the jaw) which they believe is from taking Fosamax.
Oftentimes, osterporosis is inherited no matter how much exercise and calcium intake. Even though I was diagnosed with osteoporosis - -2.5 in hip, and -2.2 in spine, I've decided to go the natural way. I was considering taking Forteo as I prefer the way it acts on bone, but the 2 year limit puts me off and the airlines won't let me take it on trans-atlantic flights (or any flight, for that matter) and I WILL NOT give up my travel plans!!
I've taken cal, mag, etc, etc, "all" of my life and was always very active with sports and recreational activities, and I still got osteo. My grandmother had osteo, so I know it is in my family, and both of my brothers were recently diagnosed with osteopenia, and I believe my aunt had it before she passed. One of my brothers was warned about the side effects by his doc because he just had extensive dental work done--no implants--but a lot of extractions, and some bone removal due to periodontal disease which I also have. He was "given" the option of taking Boniva if he wants, but I think I've talked him out of it because his t-score is not too bad and I'm worried about the effects on his dental probs, which will continue for awhile. He is a complete freak when it comes to vits (takes an unbelievable amount) and has been running everyday for 20 years. The only time he missed his daily running routine was recently when he had to be hospitalized for diverticulitis, and his biggest complaint was that he blew his running record since he has never broken it before. He continues to run regardless of how he feels--sick, colds, bad weather, etc--and it drives his wife crazy, so she follows him around in the car, when she thinks it's necessary, which in turn drives him crazy while he's running.
It would be interesting to hear from other men taking these meds, and hear how they're doing. At the moment I walk (and have always walked) at least 1-2 hours a day (briskly), take calcium with vit.D, magnesium and zinc and also do weight-bearing exercise. I'm generally feeling fine and my bones aren't bothering me - hope it stays that way, hahahaha ....
I hope you continue to do well...
TIA to all responders,
Irene
newbones
10-17-2006, 12:47 PM
Irene,
I understand your concern about the two-year limit on Forteo and taking drugs in general. I feel the same way, but I have been on Forteo for 18 months and am concerned, as others are, about what to do after the 2 years. I took Actonel for a year previously and I guess I was one of the lucky ones who didn't have any side effects from it. It seems like most of the people who have had problems have other medical conditions as well to deal with. Fortunately, I am in pretty good health and still have a hard time believing that I have osteoporosis.
As far as flying, I have flown a few times with the Forteo. Before they raised the security level recently I would put the pen in the little bag with the gel packs and put that and a couple of the ice packs that came with the Forteo in an insulated lunch-type bag and put that in my carry-on luggage. The longest trip I took that way was about 12 hours from home to my destination and it worked fine. The ice packs that come with the Forteo last a long time, longer than any ice packs I've ever seen. In August, right after they raised the security level, I flew (a 4-hour flight) and just to avoid hassles at the airport I packed the Forteo the same as above but put in my checked bags. It worked fine. I had some concern it might freeze, but I guess it was insulated enough that it didn't. I don't know how that would work on a trans-Atlantic flight, however. It was my understanding, though, that the airlines (at least most airlines) would let you take it on board even with the gel packs as long as you had the prescription with you to prove that it was a prescribed medicine.
I wish you the best.
I understand your concern about the two-year limit on Forteo and taking drugs in general. I feel the same way, but I have been on Forteo for 18 months and am concerned, as others are, about what to do after the 2 years. I took Actonel for a year previously and I guess I was one of the lucky ones who didn't have any side effects from it. It seems like most of the people who have had problems have other medical conditions as well to deal with. Fortunately, I am in pretty good health and still have a hard time believing that I have osteoporosis.
As far as flying, I have flown a few times with the Forteo. Before they raised the security level recently I would put the pen in the little bag with the gel packs and put that and a couple of the ice packs that came with the Forteo in an insulated lunch-type bag and put that in my carry-on luggage. The longest trip I took that way was about 12 hours from home to my destination and it worked fine. The ice packs that come with the Forteo last a long time, longer than any ice packs I've ever seen. In August, right after they raised the security level, I flew (a 4-hour flight) and just to avoid hassles at the airport I packed the Forteo the same as above but put in my checked bags. It worked fine. I had some concern it might freeze, but I guess it was insulated enough that it didn't. I don't know how that would work on a trans-Atlantic flight, however. It was my understanding, though, that the airlines (at least most airlines) would let you take it on board even with the gel packs as long as you had the prescription with you to prove that it was a prescribed medicine.
I wish you the best.
montesflus
10-17-2006, 08:54 PM
NEWBONES AND DESERTBLOOM :
Thanks for responding!
Newbones - I notice what you said about the fact that usually, the people with problems taking Fosomax, Actonel, etc, tended to be the ones with other medical problems which could be contributing to these effects. However, according to what I read on line and people I know personally (and I know, of course, that I cannot speak for everybody taking these meds) - these tended to be perfectly healthy, active people BEFORE taking these meds - and it was only AFTER they had begun to take them, that the problems began - BIG TIME! And yes, the ''dead jaw-bone'' problem (osteonecrosis of the jaw) is the main reason for the lawsuits against the drug companies at the moment (but I'm sure they'll get sued for other problems too)! I'm not sure about all the details of this disease, but it's apparently non-curable, leaves portions of the jaw-bone ''dead'', causes all kinds of problems with inplants and dental procedures, can leave one's appearance deformed and requires antibiotic treatment for ever and a day (but still without actually curing it). There are many people who are unaware of these problems. I have a friend who works for Kaiser Permanente HMO in Los Angeles who is currently taking Fosomax. She was having a lot of dental procedures done, and I asked her if she had told her dentist and oral surgeon that she was on Fosomax, and she looked at me as it I was crazy, she obviously had NO IDEA what I was talking about!! And here's someone who works in the healthcare industry!!
The various associations of Dentists and Oral Surgeons have come out in force for warnings to be issued about osteonecrosis of the jaw - something the drug companies seem to have done, albeit reluctantly.
DesertBloom: I wonder why your brother's doc decided to replace his medication with the once monthly Boniva? I mean, it's in the same category as his previous med and has the SAME SIDE EFFECTS .....
TO ALL WHO RESPONDED RE FLYING WITH FORTEO: I guess I'll just have to check with each individual airline but at the moment I'm planning to take the trips as planned, and then I'll consider the Forteo when I return (but knowing me, I'll probably just stick with the supplements, etc). ;>
Thx to all of you for responding,
Best regards,
Irene
Thanks for responding!
Newbones - I notice what you said about the fact that usually, the people with problems taking Fosomax, Actonel, etc, tended to be the ones with other medical problems which could be contributing to these effects. However, according to what I read on line and people I know personally (and I know, of course, that I cannot speak for everybody taking these meds) - these tended to be perfectly healthy, active people BEFORE taking these meds - and it was only AFTER they had begun to take them, that the problems began - BIG TIME! And yes, the ''dead jaw-bone'' problem (osteonecrosis of the jaw) is the main reason for the lawsuits against the drug companies at the moment (but I'm sure they'll get sued for other problems too)! I'm not sure about all the details of this disease, but it's apparently non-curable, leaves portions of the jaw-bone ''dead'', causes all kinds of problems with inplants and dental procedures, can leave one's appearance deformed and requires antibiotic treatment for ever and a day (but still without actually curing it). There are many people who are unaware of these problems. I have a friend who works for Kaiser Permanente HMO in Los Angeles who is currently taking Fosomax. She was having a lot of dental procedures done, and I asked her if she had told her dentist and oral surgeon that she was on Fosomax, and she looked at me as it I was crazy, she obviously had NO IDEA what I was talking about!! And here's someone who works in the healthcare industry!!
The various associations of Dentists and Oral Surgeons have come out in force for warnings to be issued about osteonecrosis of the jaw - something the drug companies seem to have done, albeit reluctantly.
DesertBloom: I wonder why your brother's doc decided to replace his medication with the once monthly Boniva? I mean, it's in the same category as his previous med and has the SAME SIDE EFFECTS .....
TO ALL WHO RESPONDED RE FLYING WITH FORTEO: I guess I'll just have to check with each individual airline but at the moment I'm planning to take the trips as planned, and then I'll consider the Forteo when I return (but knowing me, I'll probably just stick with the supplements, etc). ;>
Thx to all of you for responding,
Best regards,
Irene
DesertBloom
10-17-2006, 10:50 PM
DesertBloom: I wonder why your brother's doc decided to replace his medication with the once monthly Boniva? I mean, it's in the same category as his previous med and has the SAME SIDE EFFECTS .....
Irene
Hi Irene: I must not have explained my brothers situation very well, so I'll try again :). He just had his *first* bmd, on my recomendation, and I believe his score was borderline normal/osteopenic, in the hips and .1 or .2 higher in the spine. He never would have had the test if I hadn't made him promise me he would do it, because he felt it's a womens problem, which is incorrect; I had to remind him that several family members had it so he should be checked even if he thought I was nuts. Prior to this he had Never taken *any* osteo meds.
Because his t-score is not to far from normal, but still osteopenic, the doc said he could either take Boniva or *not* take it at all, and that the decision was up to him. I also forgot to mention, that he also has an esophageal problem, can't remember the name of it, but it's the same problem they warn you about with the bisphos's ( fosamax,actonel, boniva, etc) where you have trouble swallowing. I mentioned to him that if you have an esophagus problem, then the med is contraindicated, and I can only assume that the doc was thinking about this as well when he gave him the choice, but who knows, I may be giving the doc more credit than deserved. What I couldn't figure out is why a doc would prescribe a med that causes a problem you already have that can be very serious, maybe the doc temporarily forgot about this problem, but again who knows. Anyway, he opted to Not take it because he thinks it would cause more harm than good, after I explained it to him, obviously the doc didn't bother to explain arrgh...
Anyway that's the story, but one more thing, roughly 95% of the people that contract ONJ, are patients who are getting in intravenously, in a much higher dose. A few other red flags for contracting it are:
1. Long term cortisone use.
2. Already have some form of cancer where IV bisphos's were used
3. Length of treatment of the iv infused drugs whether it is any of the bisphosphonates.
4. Much higher dose than what is given in the pill form
5. Recent extreme oral trauma i.e. bone removal, bone exposure from extractions or implant problems etc.
However, I have talked to 2 people that seem convinced that they got ONJ from the oral Fosamax, and also say that the above 5 medical conditions/treatments DO NOT apply to them. One of those men I talked to said all of his dental implants have falling out, and all they can do is give them antibiotics for a very long time, and that oral antibiotic rinse/cleaner that you use with a Rotodent electric tootbrush for periodental disease.
One more thing, when I receive my Forteo via Fed Ex, they mail it from Chicago to California where we live, and those gel packs have never even begun to melt in that amount of time. I was told they last 24 hrs, but the ones I get last longer than that before they begin to melt. One time Fed Ex delivered my package to the wrong address, and it sat outside of my neighbors house for at least 4-5 hours in 115 degree heat, and they still hadn't started to defrost at all in that amount of time and in that high heat.
Pam
P.S. I'm not the least bit surprised that a nurse would not have heard of ONJ, I run across this sort of thing all the time, which is why "we" have to be extremely proactive patients.
Irene
Hi Irene: I must not have explained my brothers situation very well, so I'll try again :). He just had his *first* bmd, on my recomendation, and I believe his score was borderline normal/osteopenic, in the hips and .1 or .2 higher in the spine. He never would have had the test if I hadn't made him promise me he would do it, because he felt it's a womens problem, which is incorrect; I had to remind him that several family members had it so he should be checked even if he thought I was nuts. Prior to this he had Never taken *any* osteo meds.
Because his t-score is not to far from normal, but still osteopenic, the doc said he could either take Boniva or *not* take it at all, and that the decision was up to him. I also forgot to mention, that he also has an esophageal problem, can't remember the name of it, but it's the same problem they warn you about with the bisphos's ( fosamax,actonel, boniva, etc) where you have trouble swallowing. I mentioned to him that if you have an esophagus problem, then the med is contraindicated, and I can only assume that the doc was thinking about this as well when he gave him the choice, but who knows, I may be giving the doc more credit than deserved. What I couldn't figure out is why a doc would prescribe a med that causes a problem you already have that can be very serious, maybe the doc temporarily forgot about this problem, but again who knows. Anyway, he opted to Not take it because he thinks it would cause more harm than good, after I explained it to him, obviously the doc didn't bother to explain arrgh...
Anyway that's the story, but one more thing, roughly 95% of the people that contract ONJ, are patients who are getting in intravenously, in a much higher dose. A few other red flags for contracting it are:
1. Long term cortisone use.
2. Already have some form of cancer where IV bisphos's were used
3. Length of treatment of the iv infused drugs whether it is any of the bisphosphonates.
4. Much higher dose than what is given in the pill form
5. Recent extreme oral trauma i.e. bone removal, bone exposure from extractions or implant problems etc.
However, I have talked to 2 people that seem convinced that they got ONJ from the oral Fosamax, and also say that the above 5 medical conditions/treatments DO NOT apply to them. One of those men I talked to said all of his dental implants have falling out, and all they can do is give them antibiotics for a very long time, and that oral antibiotic rinse/cleaner that you use with a Rotodent electric tootbrush for periodental disease.
One more thing, when I receive my Forteo via Fed Ex, they mail it from Chicago to California where we live, and those gel packs have never even begun to melt in that amount of time. I was told they last 24 hrs, but the ones I get last longer than that before they begin to melt. One time Fed Ex delivered my package to the wrong address, and it sat outside of my neighbors house for at least 4-5 hours in 115 degree heat, and they still hadn't started to defrost at all in that amount of time and in that high heat.
Pam
P.S. I'm not the least bit surprised that a nurse would not have heard of ONJ, I run across this sort of thing all the time, which is why "we" have to be extremely proactive patients.
montesflus
10-18-2006, 03:20 AM
DesertBloom :
VERY INTERESTING INFO. What is the reason, though, that you have to have your Forteo Fedexed from Chicago? Is there no way you can get it in your area? BTW, Pam, the national associations of dentists and oral surgeons are apparently up in arms SPECIFICALLY because of the high incidence of ONJ in patients they're seeing, who are on the ORAL meds. :( And more are happening every day, mostly because people don't know about this problem, and are therefore not advising their dentists that they're taking this stuff (although the dentists should be asking their patients about what they're taking, as a matter of course)!
How long have you been on Forteo and have you decided what you're going to do after the 2 years are up? Oh, almost forgot, does the bone density automatically reverse itself once you're off Forteo? Meaning, would it be absolutely necessary that you have to take something after the 2 years?
Best regards, and thx again,
Irene
VERY INTERESTING INFO. What is the reason, though, that you have to have your Forteo Fedexed from Chicago? Is there no way you can get it in your area? BTW, Pam, the national associations of dentists and oral surgeons are apparently up in arms SPECIFICALLY because of the high incidence of ONJ in patients they're seeing, who are on the ORAL meds. :( And more are happening every day, mostly because people don't know about this problem, and are therefore not advising their dentists that they're taking this stuff (although the dentists should be asking their patients about what they're taking, as a matter of course)!
How long have you been on Forteo and have you decided what you're going to do after the 2 years are up? Oh, almost forgot, does the bone density automatically reverse itself once you're off Forteo? Meaning, would it be absolutely necessary that you have to take something after the 2 years?
Best regards, and thx again,
Irene
DesertBloom
10-18-2006, 04:21 PM
Hi Irene: I've only been on Forteo since April 1, so I have another year and a half to go. From what I've been told, you have to return to some med when the Forteo is finished to "retain" any possible gains in bone density. I don't know what the actual figures are on what might happen to your t-score if you were to just stop Forteo and take nothing else, I just know that it's not recommended.
Since I really don't like the bisphosphonates, I have no idea what I'll take at the end of the 2 years. Maybe there will be new drugs to choose from, but who knows... I took actonel for over a year, and it caused stomach probs, but what I really hated was the stabbing bone pain. I put up with it only because the pain was temporary, went away after a couple of minutes, but was real intense and startling when it hit. I've had periodontal disease since before I started actonel, so I didn't want to push my luck, even though I think the possibility of getting ONJ is slim. If I had major dental work done, or some cancer, I would worry much more about it.
I get the Forteo thru Fed Ex, because No pharmacies carry it in my town, or surrounding area. I suppose if I lived in LA or someplace similar I would have no problem finding it, but it's also the way my insurance handles it. Forteo is considered a "specialty med" by my insurance, and they require you to order it through a medical supply co. I don't mind because it saves a trip to the pharmacy, and they don't charge for shipping; I just pay the copay price on the med.
Talk to you later....
Pam
Since I really don't like the bisphosphonates, I have no idea what I'll take at the end of the 2 years. Maybe there will be new drugs to choose from, but who knows... I took actonel for over a year, and it caused stomach probs, but what I really hated was the stabbing bone pain. I put up with it only because the pain was temporary, went away after a couple of minutes, but was real intense and startling when it hit. I've had periodontal disease since before I started actonel, so I didn't want to push my luck, even though I think the possibility of getting ONJ is slim. If I had major dental work done, or some cancer, I would worry much more about it.
I get the Forteo thru Fed Ex, because No pharmacies carry it in my town, or surrounding area. I suppose if I lived in LA or someplace similar I would have no problem finding it, but it's also the way my insurance handles it. Forteo is considered a "specialty med" by my insurance, and they require you to order it through a medical supply co. I don't mind because it saves a trip to the pharmacy, and they don't charge for shipping; I just pay the copay price on the med.
Talk to you later....
Pam