Forteo and Pre-Menapausal Women

I am 31 years old and am osteopenic. I have had multiple fractures without a cause for many years. I am currently enrolled to start in a bone study taking the drug Forteo. I am not allowed to get pregnant during the 2 years. I read that Forteo can cause bone tumors and was wondering what other symptoms/side effects I should be concerned about? Is taking Forteo (for the bone study) my only option? I am constantly stress fracturing without falling or any cause at all, so without a medicine, I fear my body will be 100x worse within 10 years. Do you guys think this is a good idea to participate? I don't have any kids yet, but would like to get pregnant and not sure if I wanna wait 2 years? I'm extremely confused whether or not to fully participate and if it is worth it???!!! HELP!

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Know that your informed consent to participate in a clinical trial is not a binding contract. You have the right to drop out of the trial at any time for any reason with no consequences. If you feel uncomfortable with the study, or feel having a child in the next two years is a real possibility, then I would suggest not participating.

One question: Is this a placebo or active control trial? Does everyone who enrolls get Forteo? If everyone is getting the active drug, and you wanted to take Forteo anyway, and they are providing it free of charge in return for allowing them to take x-rays, blood tests, and even bone biopsies, considering the drug costs $500/month, it might be worth it.

Bone cancer (osteosarcoma) was seen in only one rat model where a strain of mice that got osteosarcomas even with no treatment but were given Forteo their entire lives did have an increase in cancers. None in mouse models and small primate models, and in the human clinical trials of Forteo there was one suspected case of osteosarcoma, but it was in the placebo group. To date, the incidence of new osteosarcomas in those who take Forteo actually seems to be lower than in people who never took it based on hospital records. More people are killed every year by lightening than are diagnosed with osteosarcoma, a very rare cancer indeed.

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Thank you for the information regarding osteosarcoma. It is much appreciated. It is a bling start with the clinical trial, but after the 6 month mark every participant is unveiled and if you started with the placebo you then begin Forteo. Every participant regardless of how they start received Forteo for the entire 24 months in exchange for bloodwork, Dexa scans, bone biopsies, etc. All tests and Forteo are free of charge during the entire time.
At 31, how long will the effects of Forteo last? And is it imperative to take the Biosphonates (sp?) afterwards, and do those have worse side effects?
I truly think I am leaning towards starting this trial especially knowing that I am not bound for the entire time.

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And, supplements are truly not an option because my Calcium and Vitamin D levels are fine. My main problem is the collagen in my bones- my cortical layer.

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@dxa, one correction...Forteo is up to $1,250.00 a month retail (at Walgreens) and more expensive at other pharmacies. @ems I took Forteo for 2 years and did not follow with a bisphosphonate (BP). I know that most Drs recommend that, but my doc left the decision up to me so I took Evista. Evista maintained my gains for 2 years post Forteo (completed 24 months) and then my score dropped by .4. I started out at -3.6 with spinal fraxs, improved to -1.9 (lowest score) one year into Forteo tx and continued with that score until 2010, 2 years post Forteo tx. My score now is -2.3 - no new fraxs; 4 years post Forteo. Still not taking a BP.

I know that the general rule of thumb is that you lose all your gains post Forteo without taking a BP, but that was not the case for me and others I know, so that just goes to show you, you can't apply these theories to everyone. My doc believes you need to take what you think is best because it will work better (placebo effect) which I believe too. I also think the Forteo worked well on me because I was convinced it would. Now maybe I'm nuts and the drug did all the work or maybe my mind and determination played a role as well.

Good luck with the clinical trial and I would do what you hearts tells you to. If you do go ahead, be sure to avoid getting pregnant, if that's possible ;o) since Forteo has not been tested in pregnant mothers or children. There are others here (around your age) that did a clinical trial (at Columbia) similar to yours so maybe they'll post. I'm thrilled the trial you're in is an active control trial. I believe there's been a lot of debate on trials that insist on the placebo arm, and that is just inconceivable to me with this type of drug. Actually should be illegal too. :o) Oh one last thing...we all respond differently to these meds, so my results aren't necessarily the norm, but pretty common.

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Here is a link with all the side effects: on?q=forteo&FORM=ECARDA#sideffects

It is not a bisphosphonate, so at least you don't have to worry about osteonecrosis of the jaw (so far as we know)

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In the country where I am, Forteo is sold for R$ 2,408.33 (about U$ 1,288) ra-3ml

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Wow those forteo prices are insane
Is This typically. Not covered by insurance ?

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where I am, no health plan pays for Forteo

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I think that anyone considering Forteo should have the best medical advice possible because it's a serious drug. But to be so young and to have had multiple fractures would indicate that you are at very high risk for fractures that could be life-changing, certainly changing the quality of your life. It is essential from the literature that you must not become pregnant while on Forteo or there could be unintended or even disastrous consequences for the baby. Sometimes we just have to make our choices based on what we do know and on what the medical evidence shows at the time. There is a risk to taking Forteo, but there is also a risk to not take it.

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@MsMC, some insurances cover Forteo, and some don't. When I started (2006) it was covered at $50.00 copay & retail was $685.00; the second year the copay jumped to $180.00, so I had to get a lot of samples and pay the $180.00. Luckily one sample is a months supply. Now the price has doubled making it out of reach for many; those whose insurance covers it are lucky. I would love to know why the price doubled in 6 years.

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Has anyone that has taken Forteo also been on low dose Premarin patch? My Dr. wants me to try this.

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Columbia is actually where I am participating in the trial. Can you direct me to where you found posts from others in a previous trial there?
It's comforting to hear that it's worked without the biophosonates and there is an alternative to them. Maybe after more positive studies insurance companies will cover this drug.

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@ems...I looked through the older post using the find it search box and couldn't find those members I mentioned. I may have been using poor search terms, but I'm not sure. If you want to, you could post a new thread asking for all those who participated in a clinical trial for Forteo to respond. Just an idea, or you could try searching yourself with different queries than what I use. I used: Forteo Clinical Trial, Forteo (pulls too many results) and Columbia. I also checked the Clinical Trial section of this board and didn't find what I was looking for either. I know I discussed this with others around your age, so you may have better luck. Another idea is to use the Edit>Find option on your browser where you can search a thread with specific words. I generally use the Highlight All option which "should" pull up every instance of the word chosen within the first page of a thread. I use a Firefox browser (mostly) and Internet Explorer has the same Edit>Find option on the Menu Bar of your browser.

Check you messages, because I have another idea, that I can't post here that might help. I'm aware of another going through a Forteo trial at Creighton University that is 31, but can't give out personal info here.

Take Care,

Pam (windblown)

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