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Old 11-04-2005, 03:45 PM   #1
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meca HB User
Newly diagnosed

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.

 
Old 11-04-2005, 08:35 PM   #2
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spinewhine HB User
Re: Newly diagnosed

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.

 
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Old 11-05-2005, 05:10 PM   #3
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greentree HB User
Re: Newly diagnosed

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.

 
Old 11-05-2005, 08:24 PM   #4
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meca HB User
Re: Newly diagnosed

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.

 
Old 11-05-2005, 09:27 PM   #5
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Join Date: Jan 2005
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taape HB Usertaape HB User
Re: Newly diagnosed

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.

 
Old 11-07-2005, 08:40 AM   #6
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meca HB User
Re: Newly diagnosed

Thanks for your kind reply taape. I am so glad both you and your friend are benfiting from the Forteo. I hope your scores keep getting better. I too have gone back and forth thinking about the risks (I don't even like to take aspirin) but I was reading a journal that stated that in a second study where adult rats were given smaller dosis of forteo for up to 20 months there were no cases of osteosarcoma. Hopefully this will hold true for humans. Please let me know of your continued improvement!

 
Old 11-07-2005, 09:14 AM   #7
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Join Date: May 2005
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naturalman HB User
Re: Newly diagnosed

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.
Dear MECA,

You indicated you were 49 years old, and I assume your a female. Back in 2001 I was diagnosed with severe osteoporosis, when I was age 56, and I'm a man. The doctors didn't want to send me for a DEXA scan, even those on x-rays it showed I had bone thinning. When I forced them to do it, it came back as very severe, a t-score of -5.2 spine and -3.2 hip. By that time I already had some compression fractures in my lumbar spine. This was terrible news back then, and I still feel somewhat depressed over it. They immediately put me on Fosamax (Forteo wasn't avail then) and now I'm on Actonel. My spine has improved over the 4 years to a -4.5 and hip to -2.7. I also had gone to an alternative MD and he did additional tests and put me on various supplements, which included DHEA and Vitamin K, as well as Calcium, Magnesium, Vitamin D and other minerals. I know how you feel, because I had worse scores than you, and it was difficult to do things physically--they still are. I'm still able to work (I'm now 61), but going on vacations is very difficult; sometimes my wife goes on vacation with other people since I can't travel that well since it's hard to lift luggage. I hope you do well on Forteo, I had decided I didn't want to try it because of the black box warnings. If I take a turn for the worse, I might decide differently. I wish you the very best, and would like to talk with you if you like to exchange emails.
Rob

 
Old 11-07-2005, 11:27 AM   #8
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meca HB User
Re: Newly diagnosed

Dear naturalman,

Thanks so much for writing. I'm sorry about your t-scores; I know it must have been a blow when you found out. I'm thrilled that you've had so much improvement though!!! Were you having back trouble when you had the x-rays? And why didn't they want to do a Dexa initially?? I know what you mean about being depressed. I'm constantly thinking about my bones, and since I've had back problems for years as well as a recent back surgery every new pain makes me a bit nervous. I saw the endocrinologist last friday (1st visit) and when I asked him whether I needed to limit myself physically, he said "NO, just no parachuting." I'm mainly going with what I feel I can tolerate. I"m also looking into alternative therapies, especially since I have to wait 3 months off the Actonel if I am to start on the Forteo. I think you are wise not to be on it since you've had such good results with the Fosamax. Now I'm not completely sure what I'm going to do. Keep those spirits up (and hopefully our bones will keep US up!). Would also like to talk. Take care, meca

Last edited by Mod-S4; 08-10-2013 at 12:34 AM.

 
Old 11-11-2005, 10:15 AM   #9
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newbones HB User
Re: Newly diagnosed

meca,
Welcome to the group! I have been on Forteo for seven months and haven't had any adverse effects. It is not an easy decision to make. I was diagnosed with osteoporosis at age 56 (my spinal t-score was -3.5, hip slightly better); it was quite a shock as I've had no fractures or broken bones. I was on Actonel for a year, then my doctor recommended Forteo since my scores were the same. I did not have to wait before starting the Forteo although my doctor made it clear that I was to stop the Actonel before going on Forteo. I'm wondering now if I should have been off the Actonel for a while. I think there is a lot that doctors don't know about how these drugs work; there is so much conflicting information out there it makes it hard to know what to do. I was fortunate that I had no adverse side effects from the Actonel as so many others have reported that they have had. I also take a calcium/Vit. D supplement as well as a multi-vitamin, try to eat a healthy diet and stay active and exercise. I probably won't have another bone scan until early next year, but like others on these boards, I'm hoping to see some improvement. Good luck to you and everyone else who is dealing with this.

 
Old 11-11-2005, 08:56 PM   #10
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Join Date: Nov 2005
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meca HB User
Re: Newly diagnosed

Hi newbones,
Thanks for the reply. I'm sorry the Actonel didn't work for you. Forteo seems to be working for a lot of people so I hope you do well on it. Just to let you know that my rheumatolagist said I didn't have to wait before starating the Forteo. The Endo says "yes". As you said, they really don't know enough about this drug. This is why it's so good to have these message boards. Why we probably know more than alot of the MD's out there. But seriously, it is hard to know what to do. I too was shocked, not so much that I had osteoporosis, but at the severity of it. It's overwhelming. I hope that your resuts at the beginning of the year show alot of improvemnte. Won't that be a grand way to start the year. Keep us opsted

 
Old 11-12-2005, 04:02 PM   #11
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pandana HB User
Re: Newly diagnosed

I too have been newly diagnosed. I was going to enter a "study" for two years with bisphosnates" but thankfully found the following link:www.gilliansanson.com. It is well worth a read and sanity restorer in this pharmaceutical driver "disease". Of special note is the "fact sheet" on these drugs. I just bought her book "Myth of Osteoporosis"and is it ever an eye-opener. Pandana

Last edited by pandana; 11-12-2005 at 04:42 PM.

 
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