43 and have osteoporosis Forteo Study

By Weak Bones Saturday, September 13, 2008

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I am 43, and went for a bone scan and found out I have osteoporosis and have been doing a bone density study at Creighton University, Omaha, NE, which I will be finished with in about a month. The reason I did this study was because it was mostly x-rays, blood work and urine samples. NO DRUGS

I have been offered to be part of a Forteo study, which would be no cost to me, but I am hearing so many bad things about bone pain and so on that I am afraid of doing this. Can anyone help me feel better about doing this study. I am seeing the best man in the country Dr. Robert Recker at Creighton University, Omaha NE.

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Pam Flores, Health Guide

9/13/08 9:35pm

Hi: How interesting to be in a study at Creighton, I hope it was all that you expected and more!! I just finished Forteo in June, and did tremendously on it. The side effects I had were dramtically improved t-scores.

We all react differently with medications, and I believe that is related to the multitude of variables between each of us. Some of us have family histories of osteo, mineral metabolism probs, secondary causes of osteo etc., etc., and have to take other medications for non osteo related health disorders which could affect how you react to a drug, so none of us come to the table on a equal plane. I know many people who have done well on Forteo and didn't have any negative side effects and some that did, but for some reason, it's the negative aspects of any given drug that gets plenty of press, and stay's in the physci much longer than the positive reactions. That's not to say that Forteo doesn't have it's risks, all medications and supplements do. You could be one that has a hard time with it or like me-smooth sailing the whole 24 months.

One thing about Forteo, is that it has a extremely short half life, so you could try it without the worry of it staying in your body for 10+ years. I don't know of any other osteo drug that exists your system as fast as Forteo does which is around 3 hours, or that stimulates new bone growth other than Strontium Ranelate. Even though Forteo is a genetically engineered form of human parathyroid hormone, I believe it is close to natural product. Our bodies produce this hormone to regulate calcium and phosphate levels, so would it be unusual to give the synthetic form a shot (no pun intended)?

The point I'm trying to make is that Forteo is a drug that can be tried and stopped, if need be, without the worry of it staying in your body for a very long time.

Only you can make this decision, but please try to evaluate it with an open mind-which I'm sure you have-and look at both the negative and the positive health benefits.

Unfortunately we don't hear all the great stories about the various meds, because most post when they have a problem or concern, because they are looking for help and understanding with their medical "problems."

If you haven't read the ccjm pdf on Forteo, it is very informative and easy to understand. Good Luck on your decision whatever you choose. The FDA has a pdf on Forteo as well that lists all the possible side effects

http://www.ccjm.org/content/70/7/585.full.pdf+html?sid=8811c3e3-2155-4f6f-b2c8-7e217bc6c9a9

Pam Flores, Health Guide

9/13/08 10:18pm

Hi Again: I forgot to ask if the Forteo study they are offering you is the sub q daily injection or is it another delivery form, like patch, pill form or something else? I'm very interested in the new delivery methods of Forteo that haven't been approved yet. If you don't mind elaborating on this, I would greatly appreciate it. I was asked over the course of my tx if the Forteo was helping my chronic pain, but unfortunately it didn't help my "pre-existing" back/joint pain that I've had for 30 years. I go to a Univ Med Center Osteo Research Clinic, so they have many trials ongoing there as well, but I've only been included in one study for a dxa reproducibility/accuracy/callibration study. When you had your dxa did they do the VFA (vertebral frax assesment) test along with the dxa?

For anyone interested in a listing of certified ISCD scanning facilities, you can go to the ISCD website and look up the nearest accredited densitometrist. It's my understanding that this additional education in dxa's education is important for accurate and state of the art readings. At the link below all you have to do is enter, the facility name/Dr name, or city/state/country to get a listing for your areas.

Good luck on your decision, I have friends that would give their eye teeth to get into a free Forteo study.

http://www.iscd.org/Visitors/certification/registry/index.cfm?requesttimeout=100

Pam Flores, Health Guide

9/13/08 10:24pm

The Univ I go to was doing a study on using Forteo for chronic back pain, since they had so many patients that had that wonderful reaction to Forteo, but I wasn't one of them, unfortunately. Sorry, my memory seems to be in a delayed response mode :( Hope I'm not too annoying :)

Weak Bones

9/15/08 9:51am

I started this study because my mother is 77 and has osteoporosis and her Dr. gave her a letter saying that people who have osteoporosis and have daughters have a higher rate of their children having it.

I am the youngest (43) of 5 girls and so I checked into it and went in for a free bone scan and they said I had it.

They asked me to do the current study that I am on, it is a easy study mostly urine, blood samples and xrays, they checked my blood work for tons of illnesses and all was well. The worst part or should I say the part that I worried about the most was I had a piece of bone removed out of my hip about the size of a eraser on a pencil (very small) for this study, still have a little pain from that and it has been 2 weeks. The next study for the Forteo is at no cost to me and they informed me it usually cost around $800 a month to use it. What really makes me mad is that since I am under 50 my health insurance does not reconize people my age with osteoporosis so it is not paid for. As for the Forteo injections I would inject it into my thigh or abdomen every morning and would do this for 18 months. They up side is they want to fly me to New York at the beginning of the study and again at the end of the study to see how much I have improved. I guess they do a xray in New York on a machine that is the only one in the country. My only concern is that this could effect me down the road. I want to thank you for all your information about Forteo and I do know there are people out there that would love to be in this study, I do consider myself lucky, heck Im still coming to grips that I have osteoporisis and now I found out I have arthritis...Thanks for all your help

Jane

10/ 5/08 11:12am

I took Forteo for over a year and would love to be doing it still, but when it was discovered that I have hemochromatosis (iron overload), my rheumatologist thought it best to use something else. I never had any pain, and the injection pen is so fast and efficient that you hardly feel anything at all. I think it's the idea of an injection that is bothersome---but Forteo is in one of those spring-loaded pens with a tiny needle, and it pops the shot before you even have time to feel it. It's not at all like self-administering with a hypodermic.

The only disadvantage I found with it was when traveling. You have to keep it refrigerated, which is fine for air travel but a nuisance in a car. You could ask your doc for a realistic estimate of how long you could safely leave it out of refrigeration.

Anonymous

11/11/08 11:44am

I've been on Forteo for a year now and I have not experienced any side effects so far but I still worry about the "bone cancer" warning to it but after much thought I decided to go on it. I took Fosmax for ten years without any side effects but after only six months off this medicine I was diagnosed with Osteoporsis. Because I still haven't experienced any fractures I can't have another bone scan until almost the full two years of use so won't know if it is working for me. Along with Forteo, calcium supplements, and exercise program I hope I will be able to keep from losing any more but will build more bone mass. I am a 68 year old female who's mother had Osteoporis.

brokenlizard

3/ 2/12 9:32am

It's years later and they are doing another Forteo study. I'm 32 and was diagnosed with osteoporosis 3 years ago. I did the study with urine and blood and then to New York (which was awesome).

Again Creighton is offering the Forteo injections. After reading about all the side effects and only can go on it for 2 years, I am super leary. I'm just really young and what are my other options after this?

Alittle background: I am an RN, decided to get a free bone scan when it was offered, found to have a low T score. Did more tests to find that I have 3 compression fractures in my lumbar spine. My hip bone test that I had done (surgery took a little chunk out) turned out fine.

I'm starting to have more back pain, but could be due to my job of nursing. If anyone has any suggestions, I would greatly appreciate it!!!

I am leaning toward the Forteo study but just would like more people who have been on it and their experiences.

THanks so much

Anonymous

3/ 9/12 3:44pm

I am a 56 yr old female and was diagnosed with osteo in my late forties. I had all the tests done to see if there was an underlying cause but none was discovered. I went on Boniva and had been taking it for about 5 years but every yr my dxa either showed no improvement and actually was a little worse. I had broken a rib several yrs ago and then my wrist a couple years ago so my dr thought I should try the forteo. I have been taking it for about 14 mos now and have had absolutely no adverse effects. I had another dxa scan after I had been on it a year and it already showed improvement especially in the spine. I know the cancer is a bit scary but since I horseback ride and want to do so for many more years without so much worry about broken bones I decided it was worth the risk for me. I hope this helps.

43 and have osteoporosis Forteo Study

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