Newly diagnosed - Osteoporosis Message Board

meca · 11-04-2005, 04:45 PM

Hi. I feel like I have stumbled onto a goldmine of information as I read these message boards. I have never been on one so I hope I am doing this correctly. I was diagnosed with severe osteoporosis about 2 months ago and my doctor put me on Actonel and said we'd re-check in 2 years. I've never been on any medication before but since my numbers were so low I really had no choice (t-score of -4.6, and -3.7 spine and hip resectively - I am 49 years old). Then I made an appointment with another doctor who said I was at very high risk and should be on Forteo. Back to my original MD who refered me to an endo guy. He said I could do either, but if I go on the Froteo I have to go off the Actonel for three months berfore starting. This kind of freaks me out because I can see my bones thinning as we speak. I'm also scared of the bone cancer thing. Also, my bones have been hurting alot lately and my feet have been cramping. Could it be from the Actonel??? I'm really leaning toward the Forteo even though the MD said the most I could hope for was a 5% increase in bone density. dDoesn't sound like much. Any thoughts? At any rate, Ii am comforted by the knowledge that there are alot of courageouspeople out there with this problem. I hope we can gain strenght from eachother. Thanks in advance.

spinewhine · 11-04-2005, 09:35 PM

Quote:

Originally Posted by meca

Hi. I feel like I have stumbled onto a goldmine of information as I read these message boards. I have never been on one so I hope I am doing this correctly. I was diagnosed with severe osteoporosis about 2 months ago and my doctor put me on Actonel and said we'd re-check in 2 years. I've never been on any medication before but since my numbers were so low I really had no choice (t-score of -4.6, and -3.7 spine and hip resectively - I am 49 years old). Then I made an appointment with another doctor who said I was at very high risk and should be on Forteo. Back to my original MD who refered me to an endo guy. He said I could do either, but if I go on the Froteo I have to go off the Actonel for three months berfore starting. This kind of freaks me out because I can see my bones thinning as we speak. I'm also scared of the bone cancer thing. Also, my bones have been hurting alot lately and my feet have been cramping. Could it be from the Actonel??? I'm really leaning toward the Forteo even though the MD said the most I could hope for was a 5% increase in bone density. dDoesn't sound like much. Any thoughts? At any rate, Ii am comforted by the knowledge that there are alot of courageouspeople out there with this problem. I hope we can gain strenght from eachother. Thanks in advance.

I had a -3.5 spine and opted for the Forteo. But first, I had to wait over a month for an appointment with the endo. This, after my gynecologist had indicated that I should see a specialist right away. When I called for the appointment and expressed my dismay at the six week wait for an appointment and my fear that I was about to crumble, the nurse/secretary or whatever told me, "You've had this for a long time. You won't break." Don't know how accurate that was, but it kind of calmed me. I don't suppose three months will make all that much difference. I was never on actonel, but others on these boards have complained about bone pain from fosamax and actonel. Good luck with whatever you decide to do.

greentree · 11-05-2005, 06:10 PM

I was also recently diagnosed with osteoporosis and given Actonel. I do get some bone pain shortly after taking the weekly pill but as the week progresses the pain goes away. I wasn't offered Forteo possibly because the T-score on my hips wasn't as bad as my spine.

meca · 11-05-2005, 09:24 PM

Thanks to both of you for your reply. I "m glad you t-score were not that bad greentree, and it does help to know that in most cases we "won't break." I have decided to get on Forteo and will therefore cut out the Actonel for the 3 months and just hope my bones don't keep spiraling down as I don't know how much lower my t scores can get! I am now quite angry that my ob didnt send me to a specialist especially after saying "Gee, I've never seen scores as low as THESE!" so that I could have gotten on the Forteo to begin with. In the meantime I hope to get some books on specific osteo exercises especially since I am now learning that walking is not the best thing for increasing bone mass as I was told by my MD.

taape · 11-05-2005, 10:27 PM

Welcome Meca,
Sorry to hear about your T Scores. I've got a friend that had T Scores similar to yours and is taking Forteo and improving bone density. I also had a low -3.1 T score and have been taking Forteo for a year now. It is helping and I sometimes worry about the side effects but feel the risk is worth the treatment. I had to wait about 6 weeks to get an app't with a specialist and approval from insurance and also wanted to get treatment right away. I thought my bone density would sink lower quickly but I don't think it happens that fast. I've heard also that it's best to get off the oral medications for a period of time before starting Forteo. I only took Fosamax for 3 weeks so it didn't seem to matter in my case. Good luck and keep us posted.