I am new at this however I have learned at age 38 I had a low bone density test. Since last Oct. of 2007 to now I have shrunk 1 inch. My doctors have suggested shots in the stomach for 2 yrs. I came unclued. I have found another option, which is supplements of calcium, vit. D3, magnesium and other supplements. I would like other insights. I don't know anyone who has Osteoporosis this young.
Thank you
Hi,
I'm really sorry about what you are dealing with. I have had osteoporosis since at least 42. It is quite bad and they have recommended Forteo (the shots) over a year ago. I've broken a hip, 3+ compression fractures in back and a wrist last year. No fun!!! Anyhow, what I want to say is that there are MANY here who are younger who are dealing with osteo. I always thought I was one of the youngest people with the condition. But there are a lot here. I'd be glad to support you in anyway I can. There is so much info here and I'm new so there are many who could guide you better. But just wanted to let you know you're not alone. Take great Care! Joanie
Thank you for your reply. The Forteo is the shot that they want me to take for two years. May I ask how you broke your hip and 3+ compression fractures in your back along with your wrist. I need to learn what I should and shouldn't do to preserve what I have. Have you also lost height like I have?
I am trying to take care. I feel like an egg shell. Courage!
Hi Courage--Welcome!!
I've been on Forteo for 20 mos and have had great results from it. I haven't had any side effects unlike the other meds I took like Actonel. The injection is really easy to do, and it doesn't really hurt at all. It's not like a intramuscular injections, it's a subq injection and the needle is the size of a eye lash. You do have to switch to another med after the 24 mos are up, but I've had wonderful results from it, where the bisphosphonates (actonel, fosomax, boniva) didn't work for me.
If you've lost height, that "usually" not always, means you had some compression fx's that went unnoticed. There are some fx's that don't cause much pain and usually occur in the struts of your vertebra. Do you also have a sway back (curve)? Have you had any x-rays for this?
You mentioned that you are 38, have you stopped menstruating? Most of the meds are used for people who have stopped. I've only heard of a few people that go on these while "not" post menopausal. If the Dr has suggested Forteo, then I would guess your t-score is below -2.5 and then add "possible" fx's to that and that would explain their concern.
You "have" to take bone vitamins, cal, D3, mag, etc regardless of whether you are taking bone meds, unless you have a mineral metabolism prob that prevents you from taking some of these vitamins.
There are lots of exercises you can do, but stay away from anything where you twist or bend your spine.
If you are considering Forteo, ask the dr if you can take it pre menopausally (if that's your situation). Also if you plan on having children it could be contraindicated or if you've ever had radiation to the skeleton. Here's a link on the med that would be good to read.
I took it because I was much more afraid of the consequences of osteoporosis than the 1 in 100,000 chance I could contract cancer. I've had 6 fx's and spinal surgeries and can't handle anymore. All these surgeries really messed up my life but I haven't fx'd in 6 years and I've improved my score a whole point (went from -3.6 to -2.6) after 12 mos on Forteo, and life goes on. I won't have another dxa until after June, so we'll see how that one comes out.
Remember that the cancer that the rats contracted during the clinical trials were from getting a dose 3-60 times larger than the human dose, plus when the rats were given the human dose there were *none* that got cancer. Fischer rats are also susceptible to osteosarcoma, and the drug was given over the length of their lifetime, while their bones were still growing. In humans it can only be given at a really small dose ( 20 mcgs) and after our bones have stopped growing.
If you have any questions about Forteo just ask, and it's important to read as much as you can about all this, and any other medical options you have. Don't panic, this is treatable, it's just hard to hear at first and especially at your age. I found out I had it when I was 30 but the only treatment was vitamins and exercise, which I did, but I still had a low t-score when I finally had a dxa many years later. I went through early meno, so that's probably why I have this, plus I have a family history of it. Having spinal surgeries doesn't help much either, but finding out about the osteo helped to explain why my fusions/fx's happened so easily.
Good Luck...
Very good article (PDF) from the Cleveland Clinic
http://www.ccjm.org/pdffiles/DEAL703.PDF#search=%22forteo%20and%20ost eosarcoma%22
Eli Lilly's paper on Forteo (PDF)
http://pi.lilly.com/us/forteo-pi.pdf
Thank you windblown. Yes my score was 2.0 Left hip was 1.86. I have Crohns and Sprue and have had to be on endocort. I was just told today that my hip is high risk for fracture. I had a MRI last July due to a car accident and they saw nothing (compresions). I have had some serious vitamin deficencies. My vitamin D is still low. My problem has been absortion of nutrients. Now knowing that supplements alone will not work, I am preparing to take the shots. I will read the articles, thank you! I have had many surgeries on my stomach and esaphogus. I am still recovering from them and 2002 brain tumor.
I am back walking on the tread mill about 40 minutes. The stretching has been more of a challenage. I am trying and trying to be positive on the out look of my life. Talk to you soon.
Thank you for the wonderful posting. You answered so many question I have about Forteo and the link to the article from the Cleveland Medical Clinic was very informative. I too am not responding well to the Fosamax that I have been on for 18 months now. Take care
Hi Courage,
I was diagnosed at age 35 when the DEXA scan was in it's developmental stages. I am now 56. This year, for the first time in 21 years, I am above -2.5! I'm actually at -2.0 (yeaaaaa!). Besides a life style change (better nutrition, exercise) I attribute my recent progress to Forteo. I had two years treatment with no side effects and gained 9-11% bone mass (depending on where you measure). It is definitely worth the tiny needle stick. Once you get past the fear of the injection, you realize that the actual shot is no big deal. Most of the time I didn't feel it. (I preferred injection on my abdomin instead of my thighs). Since you have digestive tract problems you need to make sure your calcium is absorbable. In fact, the reason you have osteopenia at your age is probably due to malabsorption, but this is turning out to be fairly common. Make sure your calcium suplement is calcium citrate. Read the label, some say they are calcium citrate, but are actually only 30%.
Good luck,
Moggs
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