taape
04-16-2007, 10:43 PM
I've been off Forteo for 6 months and I just got my recent DEXA scan back ---my T Score is worse than before I started taking it. I did not have a scan 6 months ago but one and half years ago so who knows but the Forteo helped alot in the first year for sure. So I don't have an ending T score right after finishing Forteo.
I have no idea what to do now since I can't tolerate the bisphosphonates and I'm on PPI's which according to the latest medical news can block absorption of Calcium. I exercise everyday and take Calcium and Vit D, and eat tons of yogurt. Any suggestions?
I have no idea what to do now since I can't tolerate the bisphosphonates and I'm on PPI's which according to the latest medical news can block absorption of Calcium. I exercise everyday and take Calcium and Vit D, and eat tons of yogurt. Any suggestions?
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osteoblast
04-17-2007, 12:44 AM
taape-I am so sorry to hear that your dexa scores have declined six months following completion of your forteo treatment. That has got to be tough. How much did your dexa scores improve from treatment and then did you lose all of that plus some? Don't feel any necessity to share specifics if you aren't comfortable with doing so.
You said that you could not take the bisphosphonates- did you follow forteo with anything? What are ppi's? I have not heard of ppi's. You said that they block calcium though- can you get off the ppi's. This really sounds like a dilemma. I am wondering if other options would be needed like estrogen, evista, calcitonin . If you search on bone physiology there are a number of treatments indicated. Of course, none as strong as forteo but maybe something could hold you over until something new comes out -such as denosumab . The doctors seems pretty positive about that though it may be two years yet. I hope that you can find something.
Is your doctor an endocrinologist? What is your doctor now suggesting?
Also, I am now being tested for celiac to see if it caused my bone loss. I tested positive to one of the gluten antibody blood tests and have to have an endoscopy. I also have very low d and iron stores so the dr. is suspicious. Were you tested for celiac which can be a cause of osteoporosis? If not maybe you should be tested just to rule out something that could cause further loss .
I am hoping that you find something to help!
You said that you could not take the bisphosphonates- did you follow forteo with anything? What are ppi's? I have not heard of ppi's. You said that they block calcium though- can you get off the ppi's. This really sounds like a dilemma. I am wondering if other options would be needed like estrogen, evista, calcitonin . If you search on bone physiology there are a number of treatments indicated. Of course, none as strong as forteo but maybe something could hold you over until something new comes out -such as denosumab . The doctors seems pretty positive about that though it may be two years yet. I hope that you can find something.
Is your doctor an endocrinologist? What is your doctor now suggesting?
Also, I am now being tested for celiac to see if it caused my bone loss. I tested positive to one of the gluten antibody blood tests and have to have an endoscopy. I also have very low d and iron stores so the dr. is suspicious. Were you tested for celiac which can be a cause of osteoporosis? If not maybe you should be tested just to rule out something that could cause further loss .
I am hoping that you find something to help!
taape
04-17-2007, 01:09 AM
HI Osteoblast,
I got up to -2.5 after one year on Forteo however I didn't get another test until last week after being off Forteo for 6 months. So I just know that I was improving and it's hard to believe it went down so quickly. I have yet to see the actual test as I just got an email about the results. Today the results are -3.4 which is past the -3.1 where I started at. I waited around for the past 6 months on the advice of my doctors (endocrinologist and Rheumatologist) to see if I could be in a PTH clinical trial for the patch, but they exclude patients who have already been on Forteo.
PPI's are medicine to treat stomach acid and literature is saying that they block calcium and I've been taking those over a year which overlapped with taking the Forteo. I cuold try and get off the PPI's although it seems like the damage as already been done with respect to bone density. This stomach problem is why I can't take oral bisphosphonates or maybe not the IV version. this is a delimma since I started Forteo because Fosamax made me sick.
I'll let you iknow what the doctors recommend next.
I got up to -2.5 after one year on Forteo however I didn't get another test until last week after being off Forteo for 6 months. So I just know that I was improving and it's hard to believe it went down so quickly. I have yet to see the actual test as I just got an email about the results. Today the results are -3.4 which is past the -3.1 where I started at. I waited around for the past 6 months on the advice of my doctors (endocrinologist and Rheumatologist) to see if I could be in a PTH clinical trial for the patch, but they exclude patients who have already been on Forteo.
PPI's are medicine to treat stomach acid and literature is saying that they block calcium and I've been taking those over a year which overlapped with taking the Forteo. I cuold try and get off the PPI's although it seems like the damage as already been done with respect to bone density. This stomach problem is why I can't take oral bisphosphonates or maybe not the IV version. this is a delimma since I started Forteo because Fosamax made me sick.
I'll let you iknow what the doctors recommend next.
osteoblast
04-17-2007, 02:12 AM
taape-is the -3.4 for your spine or hips?
Did you always have a stomach acid problem? If you radically changed your diet could you get the stomach acid to go away? Stomach acid is something that I don't have any experience with. I've got a slew of other problems though mostly relating to autoimmune system.
Did the doctor rule out celiac in your case?
Did you always have a stomach acid problem? If you radically changed your diet could you get the stomach acid to go away? Stomach acid is something that I don't have any experience with. I've got a slew of other problems though mostly relating to autoimmune system.
Did the doctor rule out celiac in your case?
montesflus
04-17-2007, 03:43 AM
TAAPE :
Hi. Many posters on this board have recommended the use of Strontium Citrate as an alternative to bisphosphonates, after the end of the Forteo treatment (mostly people like yourself who can't tolerate Fosamax, Actonel, Boniva). It's no wonder you couldn't tolerate Fosamax, especially with stomach acid! Strontium Citrate has to be purchased on line (it's not usually available in health-food, or drug stores). Just do a ****** search and you'll find a bunch of sites for it.
I can't understand why your doctors left you to wait 6 months after the end of your Forteo treatment regarding your participation in the clinical trial for the PTH patch. They should have KNOWN it didn't apply to people who'd already received Forteo treatment!! If you ask the docs about Strontium Citrate, they'll probably just say that they ''don't know about it''. Most docs are not really that familiar with ''alternative'' teatments. Don't let that worry you:p
Wishing you the best of luck ......:D
Hi. Many posters on this board have recommended the use of Strontium Citrate as an alternative to bisphosphonates, after the end of the Forteo treatment (mostly people like yourself who can't tolerate Fosamax, Actonel, Boniva). It's no wonder you couldn't tolerate Fosamax, especially with stomach acid! Strontium Citrate has to be purchased on line (it's not usually available in health-food, or drug stores). Just do a ****** search and you'll find a bunch of sites for it.
I can't understand why your doctors left you to wait 6 months after the end of your Forteo treatment regarding your participation in the clinical trial for the PTH patch. They should have KNOWN it didn't apply to people who'd already received Forteo treatment!! If you ask the docs about Strontium Citrate, they'll probably just say that they ''don't know about it''. Most docs are not really that familiar with ''alternative'' teatments. Don't let that worry you:p
Wishing you the best of luck ......:D
taape
04-17-2007, 08:50 PM
I'm pretty mad about having to wait 6 months to find out that I didn't qualify for the clinical trial, someone could have left me a message. I think the trial was in the process of getting finalized but still there's no excuse.
I may order stronium citrate and try that. I need to get more information about it.
The stomach problems were from taking long term pain medications. I've changed my diet already a year ago and it's helping some but I will never be able to swallow bisphosphonates or many other medications that I may require because of this. I wasn't tested for celiac and I don't know what it is.
I may order stronium citrate and try that. I need to get more information about it.
The stomach problems were from taking long term pain medications. I've changed my diet already a year ago and it's helping some but I will never be able to swallow bisphosphonates or many other medications that I may require because of this. I wasn't tested for celiac and I don't know what it is.
osteoblast
04-17-2007, 09:48 PM
taape-Celiac is a disease in which gluten(wheat, barley, rye) destroys the lining of the small intestine. When the lining of the small intestine is damaged nutrients cannot be properly absorbed. Nutrients such as vitamin d , b12, iron , calcium will not be absorbed-thus leading to deficiencies. Also this condition can cause osteoporosis .
They used to think celiac was rare but now it is thought to be present in 1 ouf of 133 people.
In the situation where osteoporosis is caused by celiac, it is important to get the celiac dealt with. The treatment is a gluten free diet to let the small intestine heal.
Those with celiac sometimes suffer intestinal upset which is misdiagnosed as Irritable Bowel Syndrome. But not all people with celiac have symptoms of intestinal discomfort.
Now that you are done with forteo and cannot take bisphosphonates , I thought if you possibly have any other cause of your osteoporosis that has not been identified then it is absolutely critical to rule celiac out as well as any other conditions that could cause osteoporosis.
Good luck to you.
They used to think celiac was rare but now it is thought to be present in 1 ouf of 133 people.
In the situation where osteoporosis is caused by celiac, it is important to get the celiac dealt with. The treatment is a gluten free diet to let the small intestine heal.
Those with celiac sometimes suffer intestinal upset which is misdiagnosed as Irritable Bowel Syndrome. But not all people with celiac have symptoms of intestinal discomfort.
Now that you are done with forteo and cannot take bisphosphonates , I thought if you possibly have any other cause of your osteoporosis that has not been identified then it is absolutely critical to rule celiac out as well as any other conditions that could cause osteoporosis.
Good luck to you.
taape
04-17-2007, 11:24 PM
Thanks for the information on celiac. I had a colonoscopy which was normal even though my stomach hurts sometimes. They said the lining all the way down was normal.
I just wonder if the PPI's is keeping some or all of the calcium from absorbing and I will ask to be tested again, then maybe tested being off the PPI's if my stomach can handle it.
The Forteo seemed to raise the calcium that I was ingesting high enough to grow bone though.
I just wonder if the PPI's is keeping some or all of the calcium from absorbing and I will ask to be tested again, then maybe tested being off the PPI's if my stomach can handle it.
The Forteo seemed to raise the calcium that I was ingesting high enough to grow bone though.
spinewhine
04-17-2007, 11:27 PM
Taape, so sorry to hear that your bone density got worse. I hope that you and your doctors can find some way to stop the decline and get your bone density back up again.
osteoblast
04-18-2007, 12:22 AM
taape-celiac damages the lining of the small intestine. They use an endoscopy for viewing and biopsy of the small intestine. Your colonoscopy would not have examined the small intestine. So even though your colon looked ok there still could be a problem with small intestine and poor absorption.
You could ask your doctor to do a celiac panel- a series of tests done on a blood draw. And then depending on results - an endoscopy would or wouldn't be ordered.
You could ask your doctor to do a celiac panel- a series of tests done on a blood draw. And then depending on results - an endoscopy would or wouldn't be ordered.
Jennita
04-18-2007, 03:14 AM
Actually I read a study that showed post-menopausal women who did weight-bearing exercise actually increased their bone density as much as would been the expected increase from estrogen pills if they had taken them. I forgot how long the period was, I believe it was 6 months of the exercise before they tested the bone density.
PikaB
04-18-2007, 08:00 PM
If the PPI's are blocking dietary absorption of calcium, you might try asking your doctor if there are any alternate methods for getting calcium into your system (I/V, etc.)
taape
04-18-2007, 10:07 PM
Osteoblast,
I also had an endoscopy at the same time - wouldn't that show the small intestines?
Pika,
That's my first question --about whether the calcium is being blocked or partially blocked from absorbing, and how to increase this if that's the problem. It was during the last 6 months of the Forteo that I was on the PPImedication. I would have more answers had I gotten the dEXA immediately following the end of the Forteo.
When my doctor returns I'll be able to find out more and figure out what to do.
I also had an endoscopy at the same time - wouldn't that show the small intestines?
Pika,
That's my first question --about whether the calcium is being blocked or partially blocked from absorbing, and how to increase this if that's the problem. It was during the last 6 months of the Forteo that I was on the PPImedication. I would have more answers had I gotten the dEXA immediately following the end of the Forteo.
When my doctor returns I'll be able to find out more and figure out what to do.
osteoblast
04-19-2007, 12:41 AM
Hi taape- from what I have read it is the endoscopy that is ordered to examine the small intestine and biopsies of several areas are taken. So maybe this was all done in your case. But still you could ask to have the celiac panel if it hasn't been done.
Did you say that they did colonoscopy and endoscopy at the same time? That would be great to get everything done at one time.
Did you say that they did colonoscopy and endoscopy at the same time? That would be great to get everything done at one time.
taape
04-19-2007, 01:01 AM
I had both tests on the same morning, no biopsies taken. Glad that's over.
DesertBloom
04-19-2007, 11:38 AM
Oh Taape I'm so sorry to hear about this. I hope you can find something to take, that doesn't cause any problems. I think having the Celiac *blood* test might give you some additional info. I had it and it was negative, so I at least know that isn't contributing to my osteo. Was your last urinary/blood calcium test normal? That would tell you if the PPI's or something else is interfering with the calcium absorption, if they performed the Ca test while you were taking the meds for your stomach. Are all your other mineral tests normal (D, phosphorous, calcium)?
Good luck, I hope you find something!!!!
Good luck, I hope you find something!!!!
newbones
04-19-2007, 01:04 PM
Taape,
I'm so sorry to hear that your bone density has gotten worse. I hope you can find something that you can tolerate that will help you. I just finished my 2 years on Forteo a couple of weeks ago and had my dexa scan this past Monday. I'm anxiously waiting on the results and hoping for significant improvement. My doctor wants me to go back on Actonel (or something) but I have been waiting to get my dexa results before deciding what to do. I have taken Actonel before the Forteo and had no problems taking it, so I guess I will probably go on it again. I certainly don't want to lose any gains I hopefully have made. Take care.
I'm so sorry to hear that your bone density has gotten worse. I hope you can find something that you can tolerate that will help you. I just finished my 2 years on Forteo a couple of weeks ago and had my dexa scan this past Monday. I'm anxiously waiting on the results and hoping for significant improvement. My doctor wants me to go back on Actonel (or something) but I have been waiting to get my dexa results before deciding what to do. I have taken Actonel before the Forteo and had no problems taking it, so I guess I will probably go on it again. I certainly don't want to lose any gains I hopefully have made. Take care.
pingo
04-20-2007, 11:26 AM
Gosh Taape, I am really sorry to hear about your results. You had such good gains and I was hoping they would be permanent. I know you must be worried and hope you can find something to stop the decline soon. I was wondering if there is any data on the successful maintanence of bone density after forteo. The drug is not that old, but there must be something out there that tells us the benefit lasts longer than the two years one is taking it. Any thoughts?
taape
04-21-2007, 03:20 AM
Newbones,
I hope your DEXA gives you good news. Let us know. If it wasn't for these stomach complications I"d just probably go on the bisphosphonates. I'm willing to take the risk for continued Forteo like I told my doctor 6 months ago but they just won't agree.
Pingo,
I am pretty worried as this has declined so quickly that it's hard to believe. Even if I did the IV infusion of Boniva I don't think it would do much to gain bone density only help further decline. Maybe there are other problems with abosrption which I will ask my doctor when she returns hopefully next week. I wonder what the research says about how long the benefits of Forteo last. I'm also looking for research of use beyond two years.
I hope your DEXA gives you good news. Let us know. If it wasn't for these stomach complications I"d just probably go on the bisphosphonates. I'm willing to take the risk for continued Forteo like I told my doctor 6 months ago but they just won't agree.
Pingo,
I am pretty worried as this has declined so quickly that it's hard to believe. Even if I did the IV infusion of Boniva I don't think it would do much to gain bone density only help further decline. Maybe there are other problems with abosrption which I will ask my doctor when she returns hopefully next week. I wonder what the research says about how long the benefits of Forteo last. I'm also looking for research of use beyond two years.
spinewhine
04-21-2007, 11:23 AM
Taape,
I'm so sorry to hear that your bone density has gotten worse. I hope you can find something that you can tolerate that will help you. I just finished my 2 years on Forteo a couple of weeks ago and had my dexa scan this past Monday. I'm anxiously waiting on the results and hoping for significant improvement. My doctor wants me to go back on Actonel (or something) but I have been waiting to get my dexa results before deciding what to do. I have taken Actonel before the Forteo and had no problems taking it, so I guess I will probably go on it again. I certainly don't want to lose any gains I hopefully have made. Take care.
I started on Actonel and I feel lucky that for the few weeks I've taken it (just four), I haven't had any of the heartburn that has plagued some people who've tried it. I'm hoping it will keep me from losing the gains I got with Forteo and that I won't start getting the bone pains I've also read about. I am due to see my doctor next week.
Newbones, I wrote to my doctor when I realized I couldn't keep the appointment that I had scheduled for the week I concluded Forteo. I asked if I could just take nothing for the month and a half I had to wait for the next available appointment or if I should start on something right away. He sent me the prescription for Actonel, so I assume he didn't want me to take nothing for that long. Please check with your doctor about waiting much longer before you go on another drug. Good luck to you and to all of us.
I'm so sorry to hear that your bone density has gotten worse. I hope you can find something that you can tolerate that will help you. I just finished my 2 years on Forteo a couple of weeks ago and had my dexa scan this past Monday. I'm anxiously waiting on the results and hoping for significant improvement. My doctor wants me to go back on Actonel (or something) but I have been waiting to get my dexa results before deciding what to do. I have taken Actonel before the Forteo and had no problems taking it, so I guess I will probably go on it again. I certainly don't want to lose any gains I hopefully have made. Take care.
I started on Actonel and I feel lucky that for the few weeks I've taken it (just four), I haven't had any of the heartburn that has plagued some people who've tried it. I'm hoping it will keep me from losing the gains I got with Forteo and that I won't start getting the bone pains I've also read about. I am due to see my doctor next week.
Newbones, I wrote to my doctor when I realized I couldn't keep the appointment that I had scheduled for the week I concluded Forteo. I asked if I could just take nothing for the month and a half I had to wait for the next available appointment or if I should start on something right away. He sent me the prescription for Actonel, so I assume he didn't want me to take nothing for that long. Please check with your doctor about waiting much longer before you go on another drug. Good luck to you and to all of us.
taape
04-21-2007, 03:00 PM
HI Spinewhine,
It's good to hear that your not having any hearburn from the Actonel and hopeyou don't have any side effects. I know people who have taken the stuff for 5 years or more without problems but eventually whether it's a combination of medications people take or the length of treatment, it breaks down the lining in their stomach. I already have stomach problems so it seems like my only alternative until PTH is available in spray or patch is getting the medication infused. I wish there were more alternatives than taking these type of medications indefinitely.
It's good to hear that your not having any hearburn from the Actonel and hopeyou don't have any side effects. I know people who have taken the stuff for 5 years or more without problems but eventually whether it's a combination of medications people take or the length of treatment, it breaks down the lining in their stomach. I already have stomach problems so it seems like my only alternative until PTH is available in spray or patch is getting the medication infused. I wish there were more alternatives than taking these type of medications indefinitely.
cmorg011
04-22-2007, 10:20 AM
Dear taape- i too am sorry to hear about your loss on Forteo- i am sorry this has happened to you. The group offers good advice concerning celiac disease: even though we believe my osteoporosis is due to years without menstruating normally, my doctors wanted to ensure nothing else was going on, too. I had an endoscopy done and they did a biopsy of my small intestine- I have not seen the doctor yet for my follow-up, but because they have not called me yet, I assume I am "all clear." Being tested is a really good idea, though- the more we can understand, the more we can fight, right? Good luck!
spinewhine
04-22-2007, 08:17 PM
HI Spinewhine,
It's good to hear that your not having any hearburn from the Actonel and hopeyou don't have any side effects. I know people who have taken the stuff for 5 years or more without problems but eventually whether it's a combination of medications people take or the length of treatment, it breaks down the lining in their stomach. I already have stomach problems so it seems like my only alternative until PTH is available in spray or patch is getting the medication infused. I wish there were more alternatives than taking these type of medications indefinitely.
I also know a number of people who've been taking the bisphosphonates for a long time without adverse reaction, but I wish there was something else too. I'm particularly nervous about the jaw necrosis business, but for now, since there doesn't seem to be anything else, I guess I'll stick with the Actonel. Good luck finding something you can tolerate.
It's good to hear that your not having any hearburn from the Actonel and hopeyou don't have any side effects. I know people who have taken the stuff for 5 years or more without problems but eventually whether it's a combination of medications people take or the length of treatment, it breaks down the lining in their stomach. I already have stomach problems so it seems like my only alternative until PTH is available in spray or patch is getting the medication infused. I wish there were more alternatives than taking these type of medications indefinitely.
I also know a number of people who've been taking the bisphosphonates for a long time without adverse reaction, but I wish there was something else too. I'm particularly nervous about the jaw necrosis business, but for now, since there doesn't seem to be anything else, I guess I'll stick with the Actonel. Good luck finding something you can tolerate.
DesertBloom
04-22-2007, 08:35 PM
Hi Cmorg: Can I ask, did you have the blood test for celiac first and then the endoscopy? I was tested with the blood test only, and it came back negative. I've heard that sometimes you have to have the endoscopy anyway, even if the blood tests come back normal. Have you heard that as well?
I'm glad you don't have it, if that's what the test determines, and I wish you luck figuring out what to do for your osteo. You did say you were going to a specialist? I've heard of someone taking forteo at the age of 26, but I know the literature makes it sound like it's only for post meno women and osteoporotic men. You might ask about it just in case, I'm not sure what they will tell you. Did you say your mens stopped, or did they return? Forteo is not intended for people who are still growing bone, which you should be because of your age, so the info on it is conflicting.
Good Luck...:wave:
I'm glad you don't have it, if that's what the test determines, and I wish you luck figuring out what to do for your osteo. You did say you were going to a specialist? I've heard of someone taking forteo at the age of 26, but I know the literature makes it sound like it's only for post meno women and osteoporotic men. You might ask about it just in case, I'm not sure what they will tell you. Did you say your mens stopped, or did they return? Forteo is not intended for people who are still growing bone, which you should be because of your age, so the info on it is conflicting.
Good Luck...:wave: