Topic: anyone ever done Forteo IM for osteoporosis??
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Was just wondering how many have had any experiences with this osteoporosis medication.
My wife needs it as her bone scanning tests show her in not too good of shape in the density of her bones....
I and she just don't like the orals.....because of pre-existing (reflux,diverticulitis,IBS....etc...).
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
WOW!
Does this mean there are NO post menopausel women out there that don't have bones that look like swiss cheese!
My wife and I understand the importance of treating osteoporisis....however due to the type
of drug they want to inject(because orals are not an option)has caused cance in LABRATS...of cours at a much hightened dose!
How bout you LABRAT!....IN PARTICULAR....any of your cousins get this high dose drug!...LOL!!!!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Did someone say Swiss-cheese bones?
Tony, I haven't used Forteo but am still considering it. First, I must make sure I can tolerate calcium/mineral/ vitamin supplementation, which has been a problem in the past. I had low blood calcium the last time my blood was drawn. I can't see wasting a lot of money on any bone-building drug until I know I can provide the proper building blocks for `construction' of new bone.
As I've said before, Forteo is really the only bone density drug out there that actually builds new bone. The biophosphonates just make you retain old bone.
And yes, the bone cancer risk bothers me, especially since my grandmother died of bone cancer.
Further, I don't like the fact that it is a daily injection because from what I've read, you really need to be on the drug for at least a year for it to make significant changes in your bone. Then there's the cost, which is around $700-750 a month, and my drug coverage isn't very good.
One suggestion - if you haven't already, look at Calcitonin (miacalcin). I think it has a different action than the orals, and I believe it still comes in a nasal spray. Years ago, it caused sores in my nose - a common reaction - so I had to move to something else.
Evista is another option with different action than the oral biophosphonates, although still an oral med - but frankly, my old Internist was not sure she liked what `it did to the brain', whatever than means. I think it works on the hormonal level but I can't remember now exactly how it is supposed to work.
If your wife is seriously considering Forteo - which is synthetic parathyroid hormone - I would suggest that she get a parathyroid test to make sure her levels are in the normal range. I believe they also measure blood calcium levels as part of this test.
I also had my Vitamin D levels checked, both the common D-25 and the not-so-common D-1,25 test. The D-25 test did come back low.
Hope this helps a little.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Thanks Tracy,
I'll let her read your post....
ANYONE ELSE OUT THERE ON THIS STUFF?
Opinions please!
It's a real shame that this has to happen to we older folks just when we could use strong bones cuz ya know like newborns....
Older folks fall down a lot!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
You are welcome, Tony.
I'll bump this up one more time for ya....
Seems like I never ran into anyone on LymeNet who was using Forteo but new members arrive here every day.....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
I have NO personal experience with osteoporosis (thank God), but I do have a teeny tiny bit of experience with drugs that "harden" bones.
I probably should say anything, but it doesn't look like anyone else knows anything, does it?
When I had my teeth out (yes, all of them), the surgeon asked me if I was on Boniva or anything like that; I said I wasn't and asked why he asked.
He said that in his experience as an oral surgeon, he had found that the teeth (like other bone) become hard as rocks. He said anyone who takes bone hardening drugs can forget routine dental fillings, root canals, etc. You can cut the tooth off at the gum line (yukk!) but not much more. It's just too hard!
Posts: 108 | From Florida | Registered: Sep 2005
| IP: Logged |
posted
Yes, unfortunately, I do have osteoporosis and have for many years now.
Back then, I started on Fosamax and now take Fosamax D due to low levels of D. I know, I know, it is not so good for the jaw/teeth, but sometimes, a choice has to be made.
Fortunately, my teeth are fine and don't need any work done and hope I never will, although, I did have a broken back tooth and went to the experts who deal with patients who have been on Zometa/Aredia, and know to be careful. It turned out well.
I also am pre-myeloma, and in 2001, I was on Aredia infusions for approximately 18 months on a monthly basis.
My endo will probably, again, suggest Forteo as an alternative, because according to him, it does work, however, that "Black Box" is what bothers me, especially since being pre-myeloma (plasma bone disease), I have backed off of that suggestion.
I even asked my oncologist of whom I see every six months about Forteo, and he said, at least in my situation, it would not be a good idea.
Again, I think choices have to be made and it is a hard choice. I'm hoping one day something better will come along for all osteoporosis folks.
lifeline
Posts: 983 | From FL | Registered: Dec 2002
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks for sharing your experience, Lifeline. I know exactly what you mean about making these tough choices.
Paula, that is VERY interesting information, and really the first I've heard anything about that. Thanks very much for the heads-up.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic