New at this forteo and osteoporosis thing - Osteoporosis Message Board

osteo cowgirl · 09-19-2005, 07:57 PM

I was just diagnosed with Osteoporosis with scores of -3.3. My doctor wants me to start on forteo immediately said I was high risk and she called this aggressive treatment. I am 51 yrs old. In reading the other threads i see talk about blood tests. My doctor never did blood work and did not mention getting any. She also gave me a prescription for a yrs worth and told me I would be on it for 21 mos. Should I worry about this? Should I get a second opinion? She did not tell me to eat alot of milk products or take calcium supplements. I am leary about the drug with the black box warnings. I am rather frightened about it all. I have already had 3 back surgerys from injuring myself at work. I hate the thought of the fractures. Any help on this matter will be deeply appreciated.

spinewhine · 09-19-2005, 08:39 PM

Quote:

Originally Posted by osteo cowgirl

I was just diagnosed with Osteoporosis with scores of -3.3. My doctor wants me to start on forteo immediately said I was high risk and she called this aggressive treatment. I am 51 yrs old. In reading the other threads i see talk about blood tests. My doctor never did blood work and did not mention getting any. She also gave me a prescription for a yrs worth and told me I would be on it for 21 mos. Should I worry about this? Should I get a second opinion? She did not tell me to eat alot of milk products or take calcium supplements. I am leary about the drug with the black box warnings. I am rather frightened about it all. I have already had 3 back surgerys from injuring myself at work. I hate the thought of the fractures. Any help on this matter will be deeply appreciated.

There are a number of us here on Forteo. I haven't had fractures but came up with a -3.5 bone density in my spine and -2.5 in the hip. I never suspected I had a problem. Just got the bone density test along with a routine mammogram. My doctor offered the option of Fosamax as the most tested treatment around, but I was so far off the curve for my age (54) that he thought Forteo would give me a better boost and I decided to try it. I didn't get a second opinion, although my doctor (endocrinologist) was recommended to my by my gynecologist, who I've seen for years. He told me the doctor was an expert in bone metabolism, so I guess I was content that he knew what he was doing.

My doctor ordered blood and 24 hour urine tests before starting me on Forteo. I think he was checking if I was losing too much calcium in the urine, which signals a problem that might require other intervention. I think others here on this board know more about it than I do.

I get follow up blood/urine every three months -- apparently the tests show the doctor something about my bone metabolism. The doctor did not want to see me again for one year.

Others on this board are skittish about taking Forteo and I certainly understand the concerns. I'm not thrilled about the black box warning either. My endo told me that one of the most prescribed medicine for cholesterol has a black box warning (didn't mention which one). Anyway, for a more anti-medication point of view, there's a good book called "The Myth Of Osteoporosis," by Gillian Sanson. She argues that low bone density does not necessarily mean greater fracture risk. Of course, you have to weigh in that mix that you've already had fractures.

Good luck with whatever you decide to do.

taape · 09-19-2005, 09:32 PM

Hello,
I've been on Forteo for a year now and my bone density has increased. I do worry some about the black box warning but the alternative of fractures and even lower bone density worry me also.

I had a whole panel of blood and urine tests before being started on it. I would asked to be given the tests to be screened to make sure your safe to use it. There are certain medical conditions that would preclude someone from using Forteo. I can't remember exactly what these are but maybe someone else will. I haven't had any noticeable side effects as I did when I took Fosamax for 3 weeks and my stomach just about burnt up.

Did an Endocrinologist prescribe the Forteo or what type of doctor. I think most Endo doctors know to give patients the blood/urine tests prior to starting therapy.

PatNJ · 09-19-2005, 11:00 PM

Hello,

I was diagnosed with osteoporosis at age 45 and spent four years taking either Fosamax or, most recently, Actonel. My T-scores just kept getting worse. In June of this year, my spine was -3.1, and at that point, an endo I had just started seeing recommended Forteo. At the time of my diagnosis, I was tested for parathyroid problems, which can interfere with calcium production, and for "female" hormone levels. The month I turned 46, five months after being diagnosed with osteoporosis, I had my last menstrual cycle.

I have been on Forteo since early July. My doctor is being very casual about blood work. At the one-month mark, she did test my serum calcium, intact PTH, and vitamin D levels. I just saw her again today, and she didn't mention any further bloodwork; I don't see her again until January.

I don't think it would be out of line for you to ask your doctor if she would be willing to "investigate" any possible disorders that may be contributing to your osteoporosis, before you begin Forteo treatment. I am not clear... were your surgeries due to spinal fractures? (My osteo work-up was initiated because I had suffered several fractures in my early 40's.)

Forteo works best in patients who receive an adequate supply of calcium (either through food, supplements, or both) and vitamin D. You should ask your doctor for specific recommendations about exact amounts.

The black box warning for Forteo is certainly alarming, but I figure that my chances of sustaining a spinal compression fracture and being incapacitated and in severe pain for the rest of my life are greater than those of developing bone cancer. But that is a decision each person has to make for her/himself.

Many of us on the board have been in your shoes. We know it can be an emotional and confusing time. Good luck to you.