Nan-NMW
02-11-2005, 06:04 PM
I am reading "What Your Doctor May Not Tell You About Ostyeoporosis" by Felicia Cosman, M.D., which was recommended by someone on this board. In the book she makes a very good point about the fact that once you stop taking Forteo, you need to start taking Fosomax or some other bone building drug or you will lose the bone mass you have gained from the Forteo. Many of those who have posted threads here say they cannot tolerate Fosomax or Actonel. I am doing all of this research before agreeing to start Forteo, as prescribed by my doctor. However, what happens if after taking the Forteo for 1-2 years, and spending the small fortune that this drug costs, and hoping against hope to not develop bone cancer, you find that you cannot tolerate the Fosomax, etc. Seems like, at that point, you would just start losing the mass you have gained. I just had the DEXA scan two weeks ago and have not previously taken any osteoporosis meds. I am thinking that it might be wise to try the drugs usually prescribed for less severe cases than mine first to be certain that I can take them forever after the Forteo. Of course, two years down the road they may have better solutions. I am going to doctor next week for the 24 hour urine and parathroid tests before making any decisions. Just thought some of you might have some input here. Thanks
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cwing
02-11-2005, 09:03 PM
I wish you the best of luck. It sounds like a good idea to test yourself on a small dosage of fosamax, etc. I had never heard of this forteo. The last time I was at my Dr.s she said there was actually a drug that builds bone. Is it the stuff you have to inject yourself with every day? Ofcourse she didn't mention any side effects. Then last week I had appoint. with thyroid specialist and he told me that this forteo is usually just used by people that have had fractures. He also told me I could do anything I wanted, if I felt I had the strenth. Digging holes,pushing wheelbarrows, ect. I am 57 years old, t-score on my spine in Dec. was-3.2.
taape
02-12-2005, 12:16 AM
Hello,
I think it's a good idea to do research before choosing a course of treatment. My osteoporosis was mainly caused by too many epidural steriod injections into my spine. I had all the blood tests also and the doctor couldn't find that I was deficient in any area but with the beginning of menopause I could be. My doctor said that I may or may not have to continue with maintenance medication after the 2 years on Forteo. I can't tolerate the Fosamax so I also wonder what I will do if I do need to continue to medication. For now I am content with daily injections as it doesn't upset my stomach. I hope in the coming years there are more optioins for treatment.
I think it's a good idea to do research before choosing a course of treatment. My osteoporosis was mainly caused by too many epidural steriod injections into my spine. I had all the blood tests also and the doctor couldn't find that I was deficient in any area but with the beginning of menopause I could be. My doctor said that I may or may not have to continue with maintenance medication after the 2 years on Forteo. I can't tolerate the Fosamax so I also wonder what I will do if I do need to continue to medication. For now I am content with daily injections as it doesn't upset my stomach. I hope in the coming years there are more optioins for treatment.
dmarlowphc
02-17-2005, 10:05 AM
I am a over the road truck driver and was diagnosed with osteoporosis while home on work comp with a broke tailbone and right wrist. I can't use the Fosomax or any of the drugs that are taken by mouth because of acid reflux and the high risk of blood clots some of the oral meds cause. I take Miacalcin. Which is a nasal spray. It doesn't cause upset stomach or any problems with clots. In fact, the only side effect I have had is occassional light nose bleeds. I broke my tailbone and wrist last September 22 and fell again 3 weeks ago up in Maryland in the snow and ice. Didn't break anything this time, Thank God! Just don't know if the Miacalcin had anything to do with it. Hope you can use it as an option to Forteo.
ThinBones
02-17-2005, 11:07 AM
I have also been prescribed Forteo but waiting to have my next dexa-scan before starting. My endo. said that they may put me on fosomax after a year to maintain bone that has been gained. I also had terrible joint pain from this drug but I would reconsider trying this as I do believe that forteo is the only real bone building drug on the market right now. I have had two thoracic fractures so I feel this is a real risk for me and everyone needs to weigh their risk factors. I was also told that I may take Forteo 3 months on, three months off, a new treatment option they are looking at. Possibly less risky and possibly the same results. I go to a big medical center and they are up on all the new treatment options (I hope). Anyway, I am applying for the assistance program from Lily as I cannot afford the drug and my insurance will not cover my osteo. If I don't qualify, no Forteo as I heard it is about $1000./month. I did ask if anyone has had osteosarcoma from taking Forteo and fortunately no one yet but it is has not been out that long and I do not know the exact statistics. I do feel every drug is a risk, especially the new ones and we all have to do what we feel is right, hopefully with good guidance from our docs. For those on Forteo now, did you have to have bloodwork six weeks after you started and on a regular basis after that? Thanks.......
CrohnieToo
02-17-2005, 11:08 AM
I am reading "What Your Doctor May Not Tell You About Ostyeoporosis" by Felicia Cosman, M.D., which was recommended by someone on this board. In the book she makes a very good point about the fact that once you stop taking Forteo, you need to start taking Fosomax or some other bone building drug or you will lose the bone mass you have gained from the Forteo. ... I am doing all of this research before agreeing to start Forteo, as prescribed by my doctor. However, what happens if after taking the Forteo for 1-2 years, and spending the small fortune that this drug costs, and hoping against hope to not develop bone cancer, you find that you cannot tolerate the Fosomax, etc. ... I just had the DEXA scan two weeks ago and have not previously taken any osteoporosis meds. I am thinking that it might be wise to try the drugs usually prescribed for less severe cases than mine first to be certain that I can take them forever after the Forteo. ... I am going to doctor next week for the 24 hour urine and parathroid tests before making any decisions. ...
I wrote a lengthy reply very early this morning ... and much to my chagrin just as I tried to submit the reply the site went down for some maintenance work.
:rolleyes: :bouncing:
We start losing bone mass with small "holes" appearing in our bones so that on cross section they look like a sponge. Then the bone mass between these "holes" begins to weaken as well. As it has been explained to me: the bisphosphonates [Actonel, Fosamax, pamidronate (Aredia) and zolendronate (Zometa)] strengthen the "walls" left between the "holes" whilst Forteo (and the still experimental Preos) increase the bone mass by "filling in" these "holes". The bisphosphonates slow the natural dying of bone cells, whilst Forteo and Preos increase the natural bone growth that has slowed down with age.
It is reported that the use of the bisphosphonates PRIOR to the use of Forteo slows down the response rate to Forteo. Its better to "fill in" the bones first, and then strengthen the bone that is there to put it in simplest terms. If one can't tolerate the oral bisphosphonates there is still the option of the bisphosphonates: Zometa (zolendronate) or Aredia (pamidronate) and thus avoid the digestive problems or damage. So there is an option after the two years of Forteo.
Regarding the bone cancer risk: the damage or risk from Forteo has occurred when it has been used PRIOR to the "growth plates" (for lack of a better term) having closed. Thus it should not be used in younger people whose bones are still growing. Rats' bones continue growing throughout their entire life. Ours do not. We've reached our bone growing peak prior to or about our 30's as I remember it. (This is all from memory off the top of my head). The rats were on Forteo their entire life cycle from their infancy to old age death. That is why they developed the bone cancer. After thoroughly reading the rat studies with Forteo I decided I was comfortable taking it as I didn't have any of the risk factors cited for excluding Forteo therapy such as a prior cancer, etc.
My local Endocrinologist, who is associated with a geriatrics practice and has a special interest in osteoporosis, prefers that I have the 24 hour urine test (done) and the parathyroid hormone intact w/ionized calcium, vitamin D 25 hydroxy (NOT vitamin D 1, 25 hydroxy) and serum calcium blood draws prior to initiating the Forteo or pamidronate therapy for my osteoporosis. Whilst my levels, except for elevated ionized calcium, were w/in normal reference ranges she insists that my PTH level be below 30 (normal reference range 10-65 at our lab) and my vitamin D 25 hydroxy levels higher (normal reference range 10-68 at our lab) but I've forgotten what level she wants it at prior to starting either Forteo or pamidronate. To achieve this she is treating me for osteomalacia with 100,000 IU of vitamin D in capsule form once a week.
Nan, you are the first person considering or taking Forteo I have encountered whose doctor has insisted on these same blood draws before initiating Forteo therapy. I hope you discuss this with your doctor and get some more information about this to share with us!
I wrote a lengthy reply very early this morning ... and much to my chagrin just as I tried to submit the reply the site went down for some maintenance work.
:rolleyes: :bouncing:
We start losing bone mass with small "holes" appearing in our bones so that on cross section they look like a sponge. Then the bone mass between these "holes" begins to weaken as well. As it has been explained to me: the bisphosphonates [Actonel, Fosamax, pamidronate (Aredia) and zolendronate (Zometa)] strengthen the "walls" left between the "holes" whilst Forteo (and the still experimental Preos) increase the bone mass by "filling in" these "holes". The bisphosphonates slow the natural dying of bone cells, whilst Forteo and Preos increase the natural bone growth that has slowed down with age.
It is reported that the use of the bisphosphonates PRIOR to the use of Forteo slows down the response rate to Forteo. Its better to "fill in" the bones first, and then strengthen the bone that is there to put it in simplest terms. If one can't tolerate the oral bisphosphonates there is still the option of the bisphosphonates: Zometa (zolendronate) or Aredia (pamidronate) and thus avoid the digestive problems or damage. So there is an option after the two years of Forteo.
Regarding the bone cancer risk: the damage or risk from Forteo has occurred when it has been used PRIOR to the "growth plates" (for lack of a better term) having closed. Thus it should not be used in younger people whose bones are still growing. Rats' bones continue growing throughout their entire life. Ours do not. We've reached our bone growing peak prior to or about our 30's as I remember it. (This is all from memory off the top of my head). The rats were on Forteo their entire life cycle from their infancy to old age death. That is why they developed the bone cancer. After thoroughly reading the rat studies with Forteo I decided I was comfortable taking it as I didn't have any of the risk factors cited for excluding Forteo therapy such as a prior cancer, etc.
My local Endocrinologist, who is associated with a geriatrics practice and has a special interest in osteoporosis, prefers that I have the 24 hour urine test (done) and the parathyroid hormone intact w/ionized calcium, vitamin D 25 hydroxy (NOT vitamin D 1, 25 hydroxy) and serum calcium blood draws prior to initiating the Forteo or pamidronate therapy for my osteoporosis. Whilst my levels, except for elevated ionized calcium, were w/in normal reference ranges she insists that my PTH level be below 30 (normal reference range 10-65 at our lab) and my vitamin D 25 hydroxy levels higher (normal reference range 10-68 at our lab) but I've forgotten what level she wants it at prior to starting either Forteo or pamidronate. To achieve this she is treating me for osteomalacia with 100,000 IU of vitamin D in capsule form once a week.
Nan, you are the first person considering or taking Forteo I have encountered whose doctor has insisted on these same blood draws before initiating Forteo therapy. I hope you discuss this with your doctor and get some more information about this to share with us!
CrohnieToo
02-17-2005, 11:18 AM
ThinBones, I am especially interested in this three month on, three month off regimen for Forteo. That's the first I've heard of it, but then I've been concentrating more on my Crohn's disease than my osteoporosis lately. I hope you learn more about this option and can share that information with us!!!!!
ThinBones
02-27-2005, 03:32 PM
Crohnietoo - any idea why the MD wants your PTH below 30? Mine was 36 and I am going to start Forteo in the next month or so and was curious..... Thanks.
CrohnieToo
02-27-2005, 07:03 PM
No, ThinBones, I don't know why. But I intend to ask and find out on the 1st at my appointment. I always have so many questions and the doctors always have such a limited amount of time to spend with us .....
I'll post after my appointment if I get a satisfactory answer. If I don't I may just give up on this Endo and go with my gyn and start the Forteo anyway. My 2003 DEXA I had a T score of -3.2 lumbar and -2.8 at the hip. I am getting 'impatient' to 'know' that I/we are doing something constructive for my osteoporosis.
I'll post after my appointment if I get a satisfactory answer. If I don't I may just give up on this Endo and go with my gyn and start the Forteo anyway. My 2003 DEXA I had a T score of -3.2 lumbar and -2.8 at the hip. I am getting 'impatient' to 'know' that I/we are doing something constructive for my osteoporosis.
ThinBones
02-28-2005, 02:26 PM
Cronhietoo - My scores are almost exactly what yours are and I too am awaiting to start Forteo. I have to have one more Dexa-scan in March first. I may call and leave a message for my doc and see if I hear anything back about the PTH values. What really scared me is having an x-ray along with the bloodwork that showed two thoracic fractures that were healed. Did not even know I had them but Forteo looks good when I heard that. Let me know if and when you start and how it goes!!!
CrohnieToo
02-28-2005, 11:15 PM
Will do, ThinBones. We shall have to keep in touch here on the board! Fortunately, I've not had any fractures (knock, Knock, KNOCK).
CrohnieToo
03-01-2005, 09:32 PM
Shucks, ThinBones, I happened to read the Aredia vs Zometa post first before getting back to this one. I pretty much covered how the Endo appointment went today in my reply to Suggi. Grumpy and disgruntled tonight. Grrrrrrrr. Sure am sorry I didn't get us any answers! Matter of fact, that rather torques my jaws and is the main reason for my disgruntlement tonight. What's worse, I've got a pretty good idea that by the time I sleep on it tonight I'm going to be feeling even more antagonistic in the morning!
ThinBones
03-01-2005, 10:20 PM
Sorry you had such a frustrating appt. I won't bank too much on your bone scan, can't believe they insisted on using their equipment, they must know it is better, as you told them, to go to the same facility year after year. Would be interesting to see the results if you went for another scan using the same machine from last year. An internal medicine doc I see on occasion (not seeing him for my osteo.) said they are not even putting as much stock in these results are they did originally. He said they now look at that as one tool for diagnosing and treating instead of the mainstay. Things are changing all the time, that is for sure, hopefully it will be for the better, for us....let me know what you decide to do. I am still pondering, waiting to hear from Eli-Lilly.
CrohnieToo
03-02-2005, 07:15 AM
I've been doing so searching on PREOS, the full PTH treatment research vs Forteo's partial PTH treatment for osteoporosis. PREOS is not FDA approved yet but, of course, the company making it has the benefit of previous Forteo research. They've done clinical trials assessing PREOS plus Fosamax at the same time, Fosamax first, then PREOS and PREOS then Fosamax, plus studied the same in men, not just women. The studies are referred to as TOP, PaTH and I forget the other name.
As with Forteo, it was found that the best effects are PREOS treatment first, then follow up treatment with Fosamax. It seems that bisphospohnate treatment prior to parathyroid hormone treatment DOES slow down or interfere with the effectiveness of the PTH treatment. Sigh. Back to square one.
As with Forteo, it was found that the best effects are PREOS treatment first, then follow up treatment with Fosamax. It seems that bisphospohnate treatment prior to parathyroid hormone treatment DOES slow down or interfere with the effectiveness of the PTH treatment. Sigh. Back to square one.
spinewhine
03-05-2005, 10:26 AM
Hi. I'm new to this board and to osteoporosis. Got diagnosed in December after requesting a bone density scan along with my routine mamogram. No fractures so far, miraculously, as my spine density was found to be pretty much rock bottom. My gynecologist freaked and sent me to a specialist. We discussed the options and I decided to try forteo, although I've always been a real needlephobe. I just figured this was my chance to get some bone density before locking it in with Fosamax. I didn't think about what would happen if I couldn't tolerate Fosamax. I was just worried about tolerating and being able to take the forteo. I had my first dose Tuesday - the doctor did it in his office. I have now done it three times myself and amazed to have done so. It's less intimidating than I was expecting and I hope it will become really routine soon. I saw these boards and thought it would be nice to be in contact with others in the same boat. I'm 54 and never gave osteoporosis a thought before getting the diagnosis. Since then, I've been kind of rocked by the diagnosis, but now I'm just hoping for some good luck with forteo. My doctor recommended working with a personal trainer at the gym so I'm doing that too. Have had lower back pain, probably from a degenerated disk, for a long time and some small tears in the knees so I have to be careful.
CrohnieToo
03-05-2005, 11:40 PM
:) Ah, SpineWhine, forgive me for smiling, but I so recognized myself as you talked about being a needlephobe and now amazed at yourself after having given yourself 3 Forteo injections!!!
For two years my family doctor and his nurse have tried to convince me to give my own B12 shots. Yeah, sure!!! Well, two years of going into his office once a month, every month, can get to be a real drag. So .... two months ago I finally got up enough nerve to give myself the B12 shot in his office under his nurse's supervision. Piece of cake!!! Of course, I admit that I was so uptight that when I put the needle in I just reacted and pulled it right back out so had to insert the needle into my thigh a second time. Sheesh!
I was bowled over tho when I filled the script and realized that now that I would be doing the B12 myself I have to give it WEEKLY instead of monthly. I even called both the pharmacist and my doctor to make sure that was right. I really am so proud of myself. You and I realize what an accomplishment this is for us!
:bouncing:
For two years my family doctor and his nurse have tried to convince me to give my own B12 shots. Yeah, sure!!! Well, two years of going into his office once a month, every month, can get to be a real drag. So .... two months ago I finally got up enough nerve to give myself the B12 shot in his office under his nurse's supervision. Piece of cake!!! Of course, I admit that I was so uptight that when I put the needle in I just reacted and pulled it right back out so had to insert the needle into my thigh a second time. Sheesh!
I was bowled over tho when I filled the script and realized that now that I would be doing the B12 myself I have to give it WEEKLY instead of monthly. I even called both the pharmacist and my doctor to make sure that was right. I really am so proud of myself. You and I realize what an accomplishment this is for us!
:bouncing:
spinewhine
03-06-2005, 12:09 AM
Congrats on the B12 shots. The first time I did the Forteo I saw a drop of fluid on my leg. I called the customer service line and they said I probably pulled it out too soon. No doubt! I was anxious to get that sucker out, although I could have sworn I counted slowly to 5. Anyway, I'm counting slower now and the next three have been more successful. Quite amazing what you can do when you decide you kind of have to.
taape
03-06-2005, 01:10 AM
Is anyone using Forteo doing injections into the lower belly area like I am? So far I only know one person. There's more flab there to inject into. I'm afraid to do a shot into my thighs due to the muscles and not much flab. Just wondering. By the way I didn't think I could do my own injections either. The first one I did supervised with the nurse after she let me practice on a piece of something that looked like skin.
CrohnieToo
03-06-2005, 07:03 AM
Nope, nope. B12 can be given abdomen or thigh. I keep reading of those who "do" the abdomen injection. I just haven't been able to try! To me for some reason it just seems like the abdomen would be too tender, just not at all sure I could do that. The thigh, on the other hand, with all that muscle just sounds better able to handle being pierced by a needle to me.
spinewhine
03-06-2005, 10:09 AM
I haven't "gotten there" yet since I see my thigh when I look down and that just seems like the most natural motion for pushing down with the pen. I figured I'd move the injection site around so no one area gets too sore so I guess I'll get there eventually (The abdomen's the place that the person injected into in the video that came with the starter kit and it just looked more awkward to reach down there).
When my doctor was explaining how to hold the pen, he told me to hold it like I was going to "kill somebody." That was to explain the way to grip it, but I think I took it as meaning I should kind of jab down hard. When I looked at all the literature that came with the pen, I realized I didn't have to actually jab it in but that I could be more gentle. Actually, I'm pleasantly surprised at how quickly the soreness at the site disappears. I felt the first shot for a few days, the second for a few days and the later ones only for a few hours or a day before the slight soreness disappeared. I also saw the first pinhole marks for a few days, and after that couldn't find the site a few minutes after I injected (jabbing definitely not the way to go). I guess I'm more relaxed. I also jabbed myself the first time because I was afraid I couldn't make myself do it.
My doctor said I could really inject anywhere (except the eye -- then I had to shut him up because I'm an eyephobe too). I think the literature talks about thigh and abdomen because that's where they gave it during the trials. As long as the abdomen works for you, sounds like you're doing fine.
The literature spoke of squeezing up a fold of skin for the injection to keep from going too deep into a muscle. My doctor didn't mention that when he injected my thigh. I've done it so there's less soreness. His shot bothered me for a few days, but I think part of it was psychological because I'm such a needlephobe. My friends laugh at me. I see a sign for the Red Cross that says blood drive and already the room is swimming.
When my doctor was explaining how to hold the pen, he told me to hold it like I was going to "kill somebody." That was to explain the way to grip it, but I think I took it as meaning I should kind of jab down hard. When I looked at all the literature that came with the pen, I realized I didn't have to actually jab it in but that I could be more gentle. Actually, I'm pleasantly surprised at how quickly the soreness at the site disappears. I felt the first shot for a few days, the second for a few days and the later ones only for a few hours or a day before the slight soreness disappeared. I also saw the first pinhole marks for a few days, and after that couldn't find the site a few minutes after I injected (jabbing definitely not the way to go). I guess I'm more relaxed. I also jabbed myself the first time because I was afraid I couldn't make myself do it.
My doctor said I could really inject anywhere (except the eye -- then I had to shut him up because I'm an eyephobe too). I think the literature talks about thigh and abdomen because that's where they gave it during the trials. As long as the abdomen works for you, sounds like you're doing fine.
The literature spoke of squeezing up a fold of skin for the injection to keep from going too deep into a muscle. My doctor didn't mention that when he injected my thigh. I've done it so there's less soreness. His shot bothered me for a few days, but I think part of it was psychological because I'm such a needlephobe. My friends laugh at me. I see a sign for the Red Cross that says blood drive and already the room is swimming.
CrohnieToo
03-06-2005, 11:35 AM
Hey, I've gotten over it now but when my kids were babies (youngest turns 40 this year) our family doctor had to hide the syringe when he entered the room to give one of them their "baby shot" or I'd start gagging violently and sweating.
I think it goes back to when I was in 1st or 2nd grade and they were giving all these darn vaccinations in the schools (seemed like every week a new one) and I was having dental work done at the same time (seemed like every week). We didn't know until years later that I am sensitive to novacaine and THAT is why my mouth hurt so bad for a couple of days after having my gums "numbed" for the dental work. I actually "flipped out" the day of our last vaccination which was the chicken pox vaccination or small pox or whatever. The one where they didn't need to use a syringe. I wouldn't believe them and when I was next in line I fell apart. I bit, I screamed, I kicked, I scratched, I dug, I fought like the devil!!!! I got the vaccination anyway but I sure put up a heroic battle! Even today I am NOT trusting of doctors.
I think it goes back to when I was in 1st or 2nd grade and they were giving all these darn vaccinations in the schools (seemed like every week a new one) and I was having dental work done at the same time (seemed like every week). We didn't know until years later that I am sensitive to novacaine and THAT is why my mouth hurt so bad for a couple of days after having my gums "numbed" for the dental work. I actually "flipped out" the day of our last vaccination which was the chicken pox vaccination or small pox or whatever. The one where they didn't need to use a syringe. I wouldn't believe them and when I was next in line I fell apart. I bit, I screamed, I kicked, I scratched, I dug, I fought like the devil!!!! I got the vaccination anyway but I sure put up a heroic battle! Even today I am NOT trusting of doctors.
spinewhine
03-06-2005, 10:31 PM
I hid under an examining table once or twice to avoid an injection when I was a kid, but it didn't work for me either! They always got me eventually. My daughter (now 21) , who's autistic and on some medications that need to be monitored with blood tests once in awhile, just stares at the needle while they're taking blood. My husband stays in the room with her. I have to go out of the room or I'll faint. At least Forteo doesn't have to go in a vein. Thank goodness for that. That, I'm fairly sure, I could not do.