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Posted
Confused My big sister (5'1"&3/4") is having trouble with her osteoporosis treatment. She was taking calcium supplements and Boniva but a physical revealed her calcium was WAY HIGH! The MAYO CLINIC is stumped (really!).

She's okay for now but her doctor has her OFF Boniva and OFF calcium for now. Has this happened to ANYBODY ELSE?

Thank you for thinking of my big sister!

Philabee48
 
Posts: 1 | Location: Philadelphia | Registered: 08-19-2006Reply With QuoteEdit or Delete MessageReport This Post
Pam
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Hi: I was on Forteo, calcium, mag, etc. and found out my calcium level was only "slightly" elevated and D3 very elevated. The dr. took me off all of the above and proceeded to run a bunch of blood and urine tests to determine what the problem is.

Unfortunately I don't have any advice, other than to have the dr. do whatever to find out why your sisters calcium is high. There are other conditions that can cause this, so they need to figure out if something else is causing the elevated cal and osteo. If there is something else leaching the calcium from her bones (other than osteo) then they need to figure that out and treat it.

As soon I as I know more I'll post back and let you know what I find out. For now I have severe osteo, and I can't take cal, or forteo which really upsets me. Hopefully my dr. will find out what the problem is and Fix it.

Good luck to you and your sister, make sure they check for all the things that elevate calcium and D3...
 
Posts: 23 | Registered: 09-22-2006Reply With QuoteEdit or Delete MessageReport This Post
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Hello Pam, et al:

Please share your experience(s) with Forteo.

My bone density test was very low for my age (48) results were -2.1, with my family having a history of this condition. For example my mom was at -2.0 by age 65, she is part of a manuf. sponsored program testing a new oral treatement

I pretty much finished menopause by 42 and have not been on HRT. My Dr. wants to put me on HRT plus Forteo ASAP. I am reserved about wanting to pump my body full of synthetics and am exploring a more holistic approach to HRT- yet with my low BMD, the chance to rapidly rebuild spinal mass to at least -1 within six months to a year is appealing.

Horses are my life! I just retired from work to get married and enjoy them full time. This recent diagnosis puts a real kink in those plans. I am concerned about the potential dizziness and leg cramps associated with Forteo effecting my riding.

Can anyone comment? What was it like being on Forteo?

Thank you,
Phoenix
Monte Cielo Ranch
montecielo@hotmail.com
 
Posts: 8 | Registered: 09-24-2006Reply With QuoteEdit or Delete MessageReport This Post
Pam
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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
 
Posts: 23 | Registered: 09-22-2006Reply With QuoteEdit or Delete MessageReport This Post
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