Forteo Injectible for Severe Osteoporosis - Osteoporosis Message Board

BrittleBones · 01-19-2005, 07:11 AM

Hi everyone. I am 49 years old and have severe osteoporosis. About 3 years ago I started breaking vertabrae in my back spontaneously. They called these breaks compression fractures. By the time I realized something was wrong, I had 2 broken bones. As of last July, 2004, I have had 8 spinal surgeries to fuse broken vertabrae in my back, a surgery to fuse my sacral joints (both sides). I've had 2 broken bones in my foot and several broken ribs. I developed osteoporosis because I had a complete hysterectomy at age 23 and was not given any estrogen replacement therapy. Therefore, my bones have the chronological age of a 60-70 year old woman.

BUT...about a year and a half ago my doctors started me on a new drug called Forteo. It is a self-injectible drug taken once a day in the stomach. I can only take the drug for 2 years and I currently have about 5 months to go before I must stop taking it. I have not had a broken bone in over a year now. I want to know if anyone else is using this drug and if it has helped them. Also, has it given them any side effects? I'd also like to share and get support from others who suffer from severe osteoporosis. Thanks so much. Kathy Mac

Oldbones · 01-19-2005, 05:57 PM

Hello Kathy Mac

I think you have been on Forteo longer than anyone else that has posted on this board. I'm so glad to hear that you have had no broken bones for a year. I'm been on Forteo for 10 months. In October 2003, I fractured my right foot, November 2003, fractured left foot and December 2003 I had a complete fracture of my right hip. My osteoporosis was most likely caused by taking Prednisone (steroids) due to my having Lupus, however I was never on a very high dose for an extended period. I had only been on steroids for a year when the fractures happened. I also had no trauma or accidents whatsoever to cause the fractures. I'm 55 and had a hysterectomy at 29 but I did take HRT for years in pill form which I may not have absorbed. The doctors said that I had Primary Ovarian Failure since I was a teenager. I'm still taking HRT but by injection every 2-3 weeks.

I have had no side effects from Forteo injections and have also had no further broken bones. I hope and pray that it works for me. At one time, I was on crutches and was wearing those funky shoes on both feet due to fractures. I don't EVER want to go through that again. It was a very painful experience and the fractured areas still hurt when I overdo walking and exercise. I take Caltrate with Vitamin D 2 times a day also.

Thanks so much for posting to the board. It is so nice to hear that Forteo is helping you.

~Oldbones

BrittleBones · 01-20-2005, 12:30 PM

Thanks Oldbones! I should have also mentioned that I have been on low dosages of prednisone for 4 years now and I was a heavy smoker for 30 years before quitting 4 years ago. Prednisone is the miracle drug from hell, isn't it? It does amazing things while stripping your body of much needed bone and just generally messing up your immune system. I take the prednisone for my RA and my COPD (very mild lung disease). I still can't stand up straight and need crutches to walk even short distances. My goal this year is to be able to stand up straight. I don't know what is preventing me from being able to do that, but I go to my Pain Management doc in early February and will get more answers. I find the most frustrating problem to be not being able to do any low impact aerobic exercise to strengthen my bones as is recommended. If I walk too much, I tend to get a fracture, but if I don't walk at all, my bones get weaker. What a catch 22, eh?

I sure wish I could turn the clock back and get some better medical advice after my hysterectomy. Take care. Kathy Mac

old waitress · 01-20-2005, 08:56 PM

I am on Forteo and have been for about 4 months. I have had no side effects. I was on fosmax with lots of gastric problems. The Dr changed me to Atinol but it was as bad as fosmax. I have not had a new bone density test yet but am hoping for a good result.

Oldbones · 01-21-2005, 12:03 PM

Quote:

Originally Posted by KathyMac

Thanks Oldbones! I should have also mentioned that I have been on low dosages of prednisone for 4 years now and I was a heavy smoker for 30 years before quitting 4 years ago. Prednisone is the miracle drug from hell, isn't it? It does amazing things while stripping your body of much needed bone and just generally messing up your immune system. I take the prednisone for my RA and my COPD (very mild lung disease). I still can't stand up straight and need crutches to walk even short distances. My goal this year is to be able to stand up straight. I don't know what is preventing me from being able to do that, but I go to my Pain Management doc in early February and will get more answers. I find the most frustrating problem to be not being able to do any low impact aerobic exercise to strengthen my bones as is recommended. If I walk too much, I tend to get a fracture, but if I don't walk at all, my bones get weaker. What a catch 22, eh?

I sure wish I could turn the clock back and get some better medical advice after my hysterectomy. Take care. Kathy Mac

Hello again KathyMac.....
I always say I have a love/hate relationship with Prednisone. I feel so much better when I take it. I need to be on a higher dose but I'm trying to grin and bear it at 5 mgs./day. I have only recently been able to start exercising. My doctor recommended a recumbent bike, not the regular stationary bike. I don't put as much pressure on my feet using the recumbent. If I walk much at all, my feet hurt where the breaks were and my hip pain gets worse. Thankfully, I've had no swelling in my feet for the last couple of months. I also have back pain but as far as I know, I've not have any vertebrae fractures. I'm almost afraid to be checked for that! My mother has the dowagers hump and a great aunt was hunched over for as long as I remember. She literally walked with her face looking at the floor. It was really pitiful.

Were your foot fractures caused by any trauma or did they just break.....as mine did? I am limited now to wearing tennis shoes. I don't make much of a fashion statement anymore.

I hope you can find out why you are unable to stand straight. What kind of doctors are you seeing, other than your PM doctor (if you don't mind me asking)? I can definitely understand the pain. I have to take Lorcet on a continuing basis and sometimes that doesn't help. A lot of my pain stems from Lupus but now I have the leftover pain from fractures. Sometimes it gets really depressing.

Hang in there!
~Oldbones