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Forteo, I wouldn't...

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Old 01-06-2011, 01:14 PM   #1
Join Date: Jan 2011
Location: Lake Forest, California, USA
Posts: 3
Fdaughter HB User
Forteo, I wouldn't...

Well, it's taken me a year to post this anywhere, but I promised myself that I had to pass on a warning. My mother started Forteo injections in 2005, gamely, in her 80s, learning how to use the needle and knowing that she didn't want 2 broken hips like her mother had suffered. We read the warnings when she started the shots ('needs a 10 year study, released for use on humans, has caused tumors in rats.') Her internist replied, 'well, that was just rats!' She began the medication, took it for 2 years straight (which was the maxium), ended the medication, the tumors had started. Even though a PET scan was negative (2006) the tumors were not followed closely enough and by 2008 they were cancerous and metastasized to her lungs & ?
Why...does the FDA release these meds without their own study, like on their own loved ones and relatives? Yes, my mom lived to an elderly age, but 5 years shorter than her own mom (the one with the 2 broken hips) and really, it's not that it was so short, it is what we deeply feel shortened her life.
Believe the warnings on these medications!
I, for one (and the rest of our family for sure) will not be taking Forteo or anything similar.
We wish you all well.
Forteo daughter

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Old 01-07-2011, 01:00 PM   #2
Join Date: Dec 2007
Location: ny
Posts: 72
Todd500 HB User
Re: Forteo, I wouldn't...

First, I am sad for the loss of your mother. I have been there and know this is not an easy situation for you or your family. I also appreciate the fact you have decided to pass along this info on forteo so that others may make an informed and educated decision.

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Fdaughter (01-07-2011)
Old 01-07-2011, 09:18 PM   #3
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Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: Forteo, I wouldn't...

I'm sorry to hear about your loss. I'm using Forteo and my doctor has never checked me for tumors. Where were your mom's tumor's located and did the doctor link them directly to Forteo use? I think it was the manufacturer Eli Lilly or another study reported one patient dying after being on Forteo however they also had other serious medical conditions.

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Fdaughter (01-08-2011)
Old 01-07-2011, 10:25 PM   #4
Join Date: Jan 2011
Location: Lake Forest, California, USA
Posts: 3
Fdaughter HB User
Re: Forteo, I wouldn't...

As far as we know, my mom's tumors started in her upper arm or shoulder. The tumor was just 'so odd' brother and I are both in the health fields and when the malignancy was diagnosed, we both immediately said...we lost the gamble, in her case the warnings were something we should have paid attention to. But, hind sight is always 20/20. On the good side, the first year of use, one of my mom's 'swiss cheese' hips actually filled in. The second year, the other hip didn't fill in...but we found that she didn't like the big calcium pills,and substituted more milk...for at least several months.
I hope there are many, many people out there who, if taking Forteo, are doing wonderfully well. For our family, close cousins are monitoring themselves for osteoporosis, and I seem to have my dad's genes that aren't predisposing me for the condition (fingers crossed)...because I couldn't make myself take the chance of using that Rx.
We did find some warnings (on the internet) on various blogs, while she was taking Forteo. They haunt us now. And, while most of us think human beings are so much alike...there are so many differences including the way our bodies react to medications.

Old 03-04-2011, 12:07 PM   #5
Join Date: Nov 2009
Location: AR, USA
Posts: 7
ajordangirl HB User
Re: Forteo, I wouldn't...

Diagnosed at 50 with severe osteoporosis of spine and moderate of hips, I took Actonel for one month (single dose), which gave me side effect of severe bone/joint pain. Advised that I must treat this, I sought a second opinion, and was again advised that I must treat. Forteo was recommended as ideal; I have been taking it for 14 months and have shown minimal improvement at the 1-yr repeat bone scan. It is my understanding that after the new "web" of bone has increased, the second scan should show increased density, and I hope to have this result. I too was very fearful of the black box warnings, and still would prefer not to be on this drug; however, after much research of the original animal studies I resolved that I would do so, as it is the one anabolic agent available. I have had no fractures, but know that I have a strong family history of these.
I have had most of the side effects others list, but they really faded after on the medication for a short time. The rapid heartrate/palpitations have recurred once, and I have wondered if they are re: elevated calcium levels at times; my doctor does not think so, but dropping a few doses of my calcium supplement while it was occurring seemed to take care of it, so I wonder. I use a daily multivitamin and one Citracal-D (generic version) daily. Not sure if that gives me the magnesium I need, and no mention is made by the dr of a dose for that...any recommendations?

Old 03-07-2011, 07:51 PM   #6
Join Date: Jan 2011
Location: Lake Forest, California, USA
Posts: 3
Fdaughter HB User
Re: Forteo, I wouldn't...

I hope that it all will work wonderfully for you. I do know that when my mom dropped her daily calcium dose to a lower level, her 2nd hip did not fill in like the first hip (she didn't like taking the large tablets.) She substituted drinking more milk for about half of the dose. I do know that these prescriptions have to have enough building blocks to work at their optimum level. Perhaps 'enough' is different for individual people. I don't know.
Hope it is absolutely a miracle drug for your problem. Best to you.

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Tdryden1 (04-26-2011)
Old 04-26-2011, 04:16 AM   #7
Join Date: Apr 2011
Location: Salisbury, MD USA
Posts: 2
Tdryden1 HB User
Re: Forteo, I wouldn't...

I wish I had seen this earlier...I am 52 years old, started with osteoporosis at a very young age (hysterectomy at 22) and used other meds which I had numerous side effects from. I started on Forteo in October of 2010 and had no problems until about 3 weeks ago when I started with terrible pain in my left femur. I have now been taken off of the drug and had a total bone scan done yesterday. Docs are thinking I have a stress fracture, hoping there is no tumor. (I hope so as well).
I hope and pray it's "nothing", I guess I will see soon enough!
Hope no one else has had any problems with Forteo...

Old 06-15-2011, 11:13 AM   #8
Join Date: Mar 2007
Location: Ojai, CA, USA
Posts: 74
Rosegarden HB User
Re: Forteo, I wouldn't...

Thank you for sharing this. I was on Forteo 2 years. I have had a femur fracture, surgery, a second femur fracture in the other leg. The doctor wants to put me back on Forteo again for a few months. I am very hesitant, and while yours in just one story, I'm just not sure I'm willing to go the Forteo again since I have not had a good experience with the other meds.

I am so very sorry about your dear mother. What a heartbreak.

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