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Hi Phoenix: Sorry to hear about your osteo...and the physical limitations involved. Hopefully you can get back to your horses and other interests real soon, but be careful you don't want any fractures.
I just found out on Friday that the dr. will be putting me back on Forteo which I'm thrilled about. My calcium level has not proven to be a major problem, because my PTH, T3, T4 etc. is all normal. We still don't know why my D3 is elevated, but I seem to be one of those that doesn't fall into mean population when it comes to blood tests results, I run a little high. Since the calcium is only slightly elevated, I will go back on Forteo. I took Actonel for over a year, which didn't help, so that was the original reason I was switched to Forteo (t-score -3.6 lumbar spine). I also have a family history of osteo, plus I have all of the risk factors for it. I've also had many failed back surgeries which didn't help much resulting in degen. disc disease etc.
I haven't had ANY problems with Forteo, even though I thought I might experience the dizziness, but I never did. I've talked to many people taking it and they say the same thing. A few experienced dizziness a couple of times for a very short period, but it went away and didn't return. Oh and I've never had any leg cramps either. I have radiating pain in my leg but it's not from Forteo. I'm not on HRT, and went thru very early unexplained meno (started at 25 now 52) but I can't find a dr. that will put me on it due to the fact that I grow a lot of breast cysts (begign) when I was on it. I have taken plant hormones, but haven't really noticed much benefit except for slightly decreased night sweats. Back to the Forteo, you have to keep it refrigerated between 36-46 degrees so if you travel, plan ahead. Eli lily gives you a travel pack with removable ice packs, but they only last for I think it is 10 hours.
As far as the Forteo goes, it's really simple to inject, I can barely feel it, and I personally haven't had any adverse reactions to it. The only thing I can think of is the light red mark it leaves on your leg or stomach which goes away in a couple of hours. It will elevate you calcium level slightly so keep that in mind when you have blood tests.
I just recently had an n-telopeptide test to determine if it was working, and the dr say's Forteo is doing its job. This is one way of checking your progress on the med w/o having a dexa scan. I've only been on Forteo since April, so I won't have another scan for at least another 7 months. I hope that I will see some improvements, but it depends on your body to answer that. I've talked to a lot of people who saw great gains, some stayed the same, and some got worse, so it just depends. I have to say though that the people with improvements out number the others.
When I finish my 2 years on Forteo I will have to switch to some other drug, and at this moment have no idea what that would be. Most drs feel that you have to remain on something so you don't loose any increases you may have gained over that period of time. This question seems to be the one that Forteo users are most concerned with especially if they can't take bisphosphonate (actonel, fosamax, boniva etc).
Good Luck on this, and hope your experience is as simple as mine. If you have any other questions don't hesitate to ask.
Pam
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