Two years ago I was diagnosed with severe osteoporosis - my bone density was -3.7. I was stunned and shockied - and I felt like I was going to break in two at any moment after hearing all that was told me about my DEXA score.
I reluctantly started taking Forteo because I was told it was the BEST way to rebuild my bones. I also changed started a religious regimen of walking, weight-bearing exercises and read every label of food I ingested (by golly - it had to have calcium in it!)
I no longer have osteoporosis - I am in the osteopenia category now, but I intend to keep buiding my bones. Forteo is limited to 2 years. I KNOW the drug helped, but I also believe that all of my other changes helped, as well. I have started fosamax and hope that it also works to help in my quest to re-build my bones.
Jan
Hi Jan, thanks for joining us and sharing your wonderful news. Another success story, this is GREAT...
I agree with you, I'm sure your diet (adding calcium and other vitamins) plus dedicated exercise helped to increase your scores along with the Forteo. Good luck with the Fosamax, diet and exercise.
I started taking Forteo in July 2008 and had to stop in September after being diagnosed with colon cancer that had spread to the lymph nodes (no connection to the Forteo!) Now, a year later, with chemo treatments completed and feeling strong a healthy again, the docs want me to go back on Forteo. Colon cancer has been known to spread to the bone (generally after liver and lung.) Although I have no sign of metastatic disease since finishing the chemo, I am worried that I might be more susceptible to osteosarcoma complications from Forteo, but can't find any information discussing whether or not it is safe for cancer patients. Are there any major osteoporosis centers, or programs, at major hospitals that could advise on this issue? thanks for any info anyone can provide.
Hi Terri, thanks for joining us and sharing your story. I'm sorry to hear about your cancer, but it does sound like you are doing well now, so that's fantastic!!
Unfortunately osteoporosis is a common side effect of cancer, so I do hope you find an answer to your question about Forteo. Have you read the Cleveland Clinic pdf on Forteo? This may help to put the cancer question into perspective for you since it is very rare in humans but more common in the rats they studied since the rats recieved a much larger dose (up to 60 times larger). These rats were given this drug for most of their lives and these rats were susceptible to this type of cancer. Humans can only take this for 2 years at a 20 mcg dose, and it can't be used on those whose bones are still growing like it was on the rats in the study. In any case, though, you need to ask a specialist about the radiation question to see what they might advise.
Look for a University Hospital near you and then see if they have a Osteoporosis Center or a Mineral Metabolism center and they should be able to answer your question about Forteo.
I don't know if it's possible to be more susceptible to bone cancer or not, so it's best to talk to a specialist to see what they say. Has your oncologist recommended this treatment also, or is this recommendation coming from another Dr?
We have several members taking Forteo that are also breast cancer survivors, that had radiation, so hopefully they'll post and give you some help.
If you want to email me, I can give you some names of hospitals or research centers in your area, since I can't see where you are located.
Good luck and if you have another question just re-post, and hopefully our other BC survivors will post about Forteo.
Thanks, Pam, for your quick response and information. I just downloaded the Cleveland Clinic document to read and will also follow up on your other suggestions. FYI, I live in New Jersey, near Princeton, and only an hour from either New York or Philadelphia. If you know of specialists or programs in this region, I'd love to hear about them. I'm open to programs anywhere... I could research online or visit if necessary. last year when i first started using Forteo, I found very little info on line. It's good to see there's more info out there and nice to communicate with other women with experience using this treatment. Also, I did not have radiation. I had surgery (colon resection) followed by 12 rounds of chemo over six months. thanks again for your help.
Hi Terri, glad to hear you didn't have radiation, and that may explain why your Dr. recommended Forteo and also since you don't have a situation where the cancer metastisized to the bone.
I just wanted to tell you that I need a little time to recommend some good Hospitals with research centers and will get back to you in the morning, at the latest. Princeton is an excellent place if they have a Univ Hospital with osteo research department or a bone and mineral metabolism department. I guess I miss read your reply about the radiation, sorry for that. Check back tomorrow and I'll have several suggestions for you.
The Cleveland Clinic pdf is easy to read I think, so if you find it otherwise just ask me for any explanations you might have. Pay particular notice to the page on the rat studies on pg 592 since it should explain why the rats contracted this and not the human subjects. Notice, though in the second study, when the rats were given the human dose of 20 mcgs, for 18-24 months, NONE of them contracted osteosarcoma. I'm not trying to presuade you in either direction since only you and your Dr. can decide which is best to do, so do as much reading as you can, and I'll talk to you tomorrow for sure. If you have anymore questions after reading the CCJM pdf maybe you could have them ready for me tomorrow so we can discuss them, to clear up any thing you might need to.
Hi Terri, are you near the Columbia Univ Med Center at New York Pres Hosp? They have an osteoporosis center (Toni Stabile Osteoporosis Center). This is just one idea for a specialist. If you can find something closer that would be great too. The above center has a very good rep and should be able to tell you if you are a candidate or not for Forteo.
When trying to make these types of decisions, get as much medical help as possible and then include your gut instincts as well since you have to decide what to do and what is best for You.
I hope this helps and good luck...
Hi Terri, sorry but that's the only article that I think explains it the best. Look at the bottom of the article and if you can't find an update date call them. I do know for a fact that many new paragraphs have been added quite frequently over the years I've been reading it, and I know there was one done not more than a month or so ago. The date you mentioned is the publication date, but they are required to update it frequently and I do know that they have done that quite extensively.
I will have to say that the major information in the article will not change dramatically since there is nothing new to report except for new idications for treatment. The way it's manufactured, how it works, who should take and who shouldn't will not change. There's very little to add to this since only one new indication has been added, which is the FDA approval for steriod-induced osteoporosis added on June 3, 2009. I wouldn't worry about the publication date unless it was a drug that had many new indications to add which they have already done. The jist of the info will continue to stay the same since this information covers all the issues with the drug and how it works, which will not change.
You can read the FDA or Eli Lily's pdf on this as well, but they say the same thing but in much more dense medical terms, whithout pictures to help to give a visual on how it works. If there isn't anything to add to a drugs paper it will remain the same, to a certain extent, but it has been updated, that I know since I've read it hundreds of times, and noticed the changes made on things like combo treatment with HRT and others, which wasn't in the first release. You can also contact CCMJ to see if there is an updated version but I would imagine they'll tell you this is it and that it has been updated many times. I'm the type to notice changes made to a paper and this has been done, they just should have included the dates each time it was updated so the reader knows this and feels more comfortable.
Good luck, Pam
Hi again Terri, I hope you can find a suitable Dr at Columbia but if not there should be other Univ Med Centers to choose from as well. Columbia does have an excellent rep, but others do to, so look for something most suited to your location and the type of specialty you need.
Take Care and all the luck in finding someone!!
I have been taking Forteo for 9 months without much problems. Do have leg cramps at night but I can deal with it for another year or so as my bones are worth it. At first the idea of taking a shot really frightened me but it is a piece of cake and easier than the fosamax. I don't know if my scores have improved but I have not broken any more bones and that sounds like a plus to me. Back at the gym but am still confused about what exercises to do and which classes to take. Just doing a lot of reps without weights as there is resistance on its own. I have found more info here than I have received from the doctors and physical therapist. But if anyone is fearful of shots etc don't be. Trying to cover most of the questions to respond to. It is expensive if you don't have insurance, which I have for now but if it goes then I will be responsible but beings you can only take it for 24 months then I will do it. Still trying to live life like before finding out that I have osteoporosis.
Hi Sandra, so glad you could join us with your very enlightening information on Forteo.
I don't know if I've mentioned this before, but there are seveal blood and urine tests you can have that will tell you and your doc if the Forteo is working and they are called "bone marker" tests. There are two types: 1) bone formation markers and 2) bone resorption markers. I have the 24 hour urine N-telopeptide test (aka NTx) 2 or 3 times a year and it will tell you if you are gaining bone or loosing bone. It's a really simple test and most insurance co's cover it. If you have a insurance that doesn't, you can get your Dr. to submit a form to the insurance that explains the importance of this test for use "between" dxa's. None of us want to wait 1-2 years to have another dxa, so this test is good since it can evaluate your current formation or resorption markers. We "can't" be expected to have to wait and incur great expense without knowing some how if Forteo is working.
The test won't give you a t-score, nor is it a replacement for a dxa, but it is a very useful test to determine treatment success/failure. Imagine if you had to wait 2 years, like some of us, just to find out if Forteo is working. How terrible is that!! Osteoporosis meds aren't like blood pressure or cholesterol meds, just to name a few that will tell you if your treatment is working now or in several months.
Here's an article on bone markers I wrote that should explain all you need to know to get this test ordered. If need be take the article with you to the Dr. so they can see that these tests exist, even though there are some Drs that aren't familar with them they've been around for a very long time.
Let me know if you need further explanation on this, and if you have an insurance who doesn't cover it, I may be able to give you suggestions on how to get it covered since it's "usually" less expensive than a dxa. Ideally a bone marker test would initially be done before you start any med so you can compare your baseline score, based on what's considered normal for your age and postmeno status. That said, this does not mean you can't have the test now after you are already on a bone med. Since these test are used as a comparison from one to another, it will tell you if you decline or increase your bmd even though you are already taking Forteo.
We should all have this test, since dxa alone is not enough to give a true picture of all components involved in evaluating bone density.
Let me know if you need anymore help on this, and anyother questions you may have.
As far as what is recommended for weight bearing exercises, here's the National Osteoporosis Foundations recommended for this any many other recommeded osto execise that's important. They aslo include functional exercises and strength training advice, as long as you don't have any pre-existing medical problems that the exercise could make worse, like osteoarthritis, RA, spinal injuries and other types of injuries like knee problems. If you could see a Physical Therapist they can evaluate your overall osteo/general health and give you a personalized exercise regime designed especially for you, that would include any limitations you may have.
Good luck and thanks for joining us and adding you very important info on Forteo.
I did have some urine test before the Forteo and in July had these blood tests. Collagen Crosslinked N-telopeptide, Urine, Calcium serum, osteocalcin, Bet D, 25-Hydroxy, alkaline phosphatase, breatinine, serum with glomerular filtration rate. She wants to see me in a year. Does this sound like the Unrine N-telopeptide (NTx) test. I also had the blood tests in January. I know you are suppose to stand up for your own health, thats what I tell everyone else, but I tend to just say yes, yes, and yes. Trying to change that but it is hard to do sometimes.
Hi Sandra, yes the Collagen Cross links is a bone marker test and you had the test N-telopeptide that I have. The important thing to find out is what your score was and if they repeat the NTx (aka N-telopeptide) to see if you are improving according to your score. If you are then that means the Forteo is working!!! Your Dr is very thorough since you also had all those other tests which will give him or her a lot of info on your bones. So if you have the NTx print out and can compare your first score to the second one done, you'd want to see a higher number than the first one that was done, meaning the Forteo is doing it's job. Did the Dr. explain all this? If not just double check that your bone marker tests are showing an improvement so at least you know this much until your next DXA.
Anyway, this is great news, your Dr. is doing all the necessary tests and keeping track of everything. I ask for copies of all tests results which it sounds like you do as well, so keep up the great work!! Thanks for letting us know that you are having Bone Marker tests.
Take Care,
Pam
Hi Pam,
I've been taking Forteo for about 20 months. I had a dexa last November and I had an enormous increase in my BMD. I'm thrilled. I see an endo at Columbia Presbyterian. They are excellent for the person looking for a Dr. who lives in Princeton. It's an easy ride for you. (I live on the eastern tip of Long Island.) It's worth going there. I hven't had any problems or side effects. I've had leg cramps from before taking Forteo. My cramps went away with my fractures. One thing I want to say about the bone marker test is that with all of our problems with the present health care system in regard to payments, I wonder if it's just as well to give the drug a chance to work. I'm not a health care worker and I don't know how this stuff works, it's all magic to me. I don't mean to sound that i want to be stupid or ignorant about medicine, but it's easy to get crazy or think that something is not working when it might be. For example, side effects: When is a leg cramp a side effect of a drug and when is it a leg cramp? I found that living in a rural area meant that I didn't walk as much as I did when I lived in NYC. I got myself a sweet dog, and I began to walk a lot again and my leg cramps magically disappeared. I know that there are real side effects that people have the misfortune to suffer with, but, sometimes it's also easy to jump to the wrong conclusion and deprive yourself of a fine drug. I know that I'm bringing up different issues ie; health care payments & side effects, but I think a lot about all of it. I also was horrified at the idea of injecting myself, but I never think about that anymore. Next: Traveling with Forteo, more annoying than anything else. Call ahead to get a refrigerator in your room. Be very serious on the phone and everyone will treat you very well so long as you don't die on their watch. I mean at hotels & motels in US. That's been my experience. You have to keep it cold and make sure the refrigerator is turned on. Now I have to think seriously about what comes next. I wish I could continue taking Forteo.
Hi Raven, so glad you could join us. Congrats on your wonderful improvements on Forteo!! Have you decided what you'll take next?
Bone marker tests are good for those who have to wait for 2 years or more in between dxa's, but they are generally used to confirm that treatment is working. I don't know of anyone who was taken off of Forteo from these tests, but I had them because I couldn't afford to continue taking Forteo if it wasn't working, but luckily it was according to the bone marker test.
I'm glad you have a companion in your dog; they are so much fun and provide so many wonderful things, one being good exercise for you and so much love in return.
Thanks for the advice on traveling with Forteo; we get a lot of questions about that and how to do it, so your words of wisdom should help a lot of our members.
Let us know what you decide on what's next after Forteo, if you want to, and good luck finding something that works just as well.
I hope the Forteo has helped my cartiladge since almost all of us have to worry about arthritis at some point so I hope the Forteo helped mine.
One of our expert Drs works at Columbia I wonder if you've ever run into him? Dr. Neil Gonter?
Keep up the good work!!
Join us any time...
Pam
I started Forteo six weeks ago. I was very reluctant - worried about actually giving the injections and also the future side effects. After two weeks I had trouble with leg cramps during the night, but found that taking a multi-vitamin, magnesium and eating a banana at night has helped - no more waking up in the middle of the night.
Is insomnia a common side effect? I've had trouble sleeping through the night for a couple years now (I'm 53 yrs old), but it seems worse since starting Forteo.
Oh - and the actual shots are not too bad. Haven't quite figured out what to do with my used pens, but I'll ask the doctor or call the city. I am scheduled for more blood work and the 24-hr urine test in the next few days - we'll see how that goes. So far so good.
My spine was -3.2 before starting Forteo. I'm optimistic for good news as I continue with Forteo.
Hi Pam, welcome and I'm sorry I missed your post. As far as I know, Forteo shouldn't cause insomnia. I have insomnia off and on, but I been off of Forteo for over a year now.
I'm glad the injection isn't bothering you too much. You can take the used pens to any place that takes "medical waste." Look through your phone book or ask your Dr. where the nearest one is. Sometimes the Fire Dept will do this but every city is different.
Good luck with the Forteo and I hope you do very well.
Hi there,
I had a four level cervical spinal fusion 1 1/2 weeks ago. I am 50 years old and do not have osteoporosis(but a rather bad spine). My doctor is recommending use of Forteo to promote new bone growth/decrease the possibiltiy of non fusion. I am normally fairly active, walk 3-5 days a week. He is recommending being on Forteo for 3 months. The comment about bone pain and cancer risk has me a bit worried. Any thoughts?
Hi Terri, welcome... It's not unusual for a doctor to recommend Forteo after the type of surgery/injury you have. Here's an article on the use of Forteo for fractures/fusions , but it was in relation to hip surgery. I've had many spinal fusions and I wish Forteo had been around back then, because it might have helped me and prevented the many failed fusions I had.
I did take Forteo for 2 years and did really well on it, and haven't fractured since. I understand you don't have osteo and are concerned about the possible side effects. I personally didn't have any of them, but there are others who have. We all react differently to these medications so it's really hard to say how your situation will be.
If you don't want to take Forteo, that is entirely up to you. We always have to weigh the risk versus benefit will all drugs and then decide what we want to do.
I just wanted to mention that what your doctor is recommending isn't all that unusual since Forteo can help speed healing and produce new bone faster than if you didn't take it. Discuss your concerns with your doctor and see if the two of you can't come to some resolution.
Good luck and if you have another question about Forteo or anything else just post again.
Hi patgodfrey, welcome and thanks for your question. Hopefully our members will chime in on the side effects with Forteo. I took Forteo and didn't have any side effects, other than greatly improved scores, so I can't really help you with this, other than it is listed as a side effect by the manufacturer.
If you have any other question, just post again and again, hopefully our members will help you out with this, and let you know if they experienced this. Hang in there and good luck...
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Hi Everyone, I hope you're all doing well and had a nice Holiday weekend!!
If you are still using the old Forteo pen please let us know since only the new one is pictured above.
We'll also discuss ways to travel with Forteo and any letters that you would need if traveling on an airplane.
Let us know what questions you may have and if you are still considering Forteo so we can answers those concerns as well.
I would also like to discuss the Forteo registry, so if anyone has signed up for this, at Eli Lily, let us know how it went and if you think this is a good idea.
Join us whenever you have a free moment!!
Just had my dex scan and my results were amazing. After taking Forteo for 23 months I don't have Osteoporosis but Osteopenia. My hip score was -2.7 before taking and this scan results was -1.3. My back score before was -2.0 and now 0.6. Along with Forteo I was taking calcium and vitamin D supplements and weight bearing exercise, speed walking at least three times a week. I did not have any side effects other than occassionaly night sweats but I do not taken any other medication.
I am a 69 year old and before taking I was on Foxamx for ten years and will return taking this after my last month of Forteo.
Jean
Hi Jean, glad you could join us and share your fantastic results!! You must be thrilled with your t-scores, keep up the good work with the exercise and supplements. I'm so glad the Forteo worked so well and you didn't have any side effects!!
Was your Dr amazed at your new scores, I bet he was...
Congrats again, and good luck with your follow-up treatment!!
Hello, Jean,
You mention in your post that you were on Fosamax for 10 years. Did your bone density improve over that ten year period? What was the specific reason your doc put you on the Forteo? Also, did you experience side effects from the Fosamax?
If, over that ten year period, your bone density showed significant improvement, why was there a need for Forteo? If, on the contrary, your bones did not show significant improvement while on the Fosamax, why would you go back on it ''after'' your Forteo treatment?
Kind Regards,
Revital
Dear Revital,
Fosamax showed a slight increase in bone density for the firts 4 years staying in the Osteopenia area but the next two bone scans after, 2 years apart lost small amounts,-1.8 to -2.0 then after 10 years stopped taken anything for about 6 months before next bone scan which put me in Osteoporosis with -2.7. That's when the doctor put me on Forteo. I think they put me on Forteo because of my age, 67 at the time having Osteoporosis and my desire to stay as active as I was.
While I was on Fosamax had slight joint pains and I made sure I went to the dentist every 6 months because of the jaw bone warning. Doctor put me on Fosamax again to try to maintain bone density. I asked him about other drugs but he thought with having no major problems with taken Fosamax was the way to go for the next two years and see.
Hope that answers you questions.
Jean
Hello,
I am to begin treatment with Forteo next week after a lesson in using the pen. The pharmacist however told me I had to take calcium supplements in order for Forteo to work. I cannot do that, I am a single kidney patient, cannot take calcium , have not since 1972. I do take vit. D3 and Magnesium. I do weight bearing exercise. I am 60 yrs. old.My dexa scan showed osteoporsis in hip and severe osteopenia in spine. I am not able to take any of the other drugs like Fosomax or Boniva. I guess my question is, is it true that in order for Forteo to be effective I must take a calcium supplement. I would like to know before I go back to the doctor so I can speak with some knowledge. Thanks for your help and input on this.
J
Hi J welcome and thanks for your question. Before you attend the class on the Forteo injection, you need to discuss your calcium and kidney issues with the Dr. I'm not a Dr. so I couldn't tell you if your pharmacist is absolutely correct on his statement, so make sure you discuss it with the Dr. before you proceed with the Forteo class or get it filled. Is the class being conducted through Eli Lily or through your Dr.'s office? If you are seeing a Eli Lily rep for the instructions they may be able to answer this question for you, but still double check with the Dr. also.
When you see your Dr. just be sure that he or she is aware that you only have one kidney and that you can't take calcium. Once you discuss this I'm sure he'll know what you should do.
In the meantime if you'd like to read the FAQ's on Forteo here are two links that explain the drug and how it works. Look for information on calcium intake within the article to help you formulate your questions for your Dr.
Forteo article from the Cleveland Clinic: http://www.ccjm.org/content/70/7/585.full.pdf+html?sid=9e07cee4-b325-4378-af70-e4b2c0b570f2
Forteo Patient Insert: http://pi.lilly.com/us/forteo-pi.pdf This link is a copy of the literature that comes with the pen. You can also call the manufacturer and see what they say, but your Dr. will have to make the determining decision.
Good luck finding out about the calcium and kidney issues and let us know what your Dr. says if that's ok with you.
An update: I had my class after first talking with the Dr. about the calcium supplement issue. He had no problem as long as I upped my dietary intake of calcium. Not hard to do if you add sardines, salmon and a few other calcium rich foods. I do not drink pop, limit caffiene to 2 cups of coffee in the morning and get plenty of weight bearing excersise. So I was good to go in using Forteo even with the single kidney. My class was with a nurse that Lily provided and we met at my doctor's office in a nice conference room. I found it very informative and helpful. I am very appreciative to have been offered this option. I received my Travel pack and various other goodies to begin treatment. I have had 2 injections now with no side effects. Not sure when they are supposed to kick in, but normally I react immediately if I am going to do so. Anyway after the class and discussion I am very pleased to be taking Forteo and doing something positive toward a better outcome in 2 years.
Hi J, It's wonderful to hear how well the Forteo class went!! I'm also thrilled that increasing dietary calcium will solve your supplement problems. It's very easy to get extra dietary calcium, so you shouldn't have any problems with that.
I didn't have any side effects from Forteo and I know quite a few that were similar so don't be surprised if you don't have any problems.
I have been using forteo for about five months. No problems except when traveling. I decided to not take forteo on trips because of the need to keep it cold...not easy on 14 to 18 hour air flights. I stopped for two weeks while on a trip and started again when I got back. Am planning another long trip in January and plan to leave forteo home . Will continue again after ten day trip.
I will start on FORTEO after the class at Columbia. I have no choice: I have the Lumbar spine T-score of 2.6
A femoral neck- T-score of 2.3
Total Hip T-score of 1.1
Distal-one third radious T-score of 2.8
I took actonel for 7 years, plus calcium and Vitamin D
I am 61 years old. In the last 21 months a fracture my patella bone, my wrist and broke a few ribs.
I excercise daily, weight bearing, cardio etc. (weight bearing 4 times a week)
Do you think FORTEO will help me?
Is it hard to do it everyday?
How do you travel with this?
Hi Ester, welcome...Forteo is NOT hard to do. Forteo comes in a pre-measured dose pen, and is nothing like a regular injection. The needle is about the size of an eyelash and doesn't hurt. Here's some information on injecting Forteo, from Eli Lily. Here's all you need to travel with Forteo.
I sure hope this medications helps. I did really well on it, but we all react differently.
Good luck and I hope you don't have any more fractures.
Is it worth to try reclass before starting with FORTEO?