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Old 12-11-2011, 09:38 AM   #1
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nightwinds HB User
New and Confused

Hi, first post to this board, I found it because I am desperate.
I am 50 years old and have had osteoporosis for 15 years. I had my ovaries out at 33 due to cancer. Since that time I have fought the doctors on taking medications, but have had to succumb due to my bones declining. I am already at T -3.3
I took fosomax, then switched to Actonel, for almost 5 years. Now I have severe GERD, so he now wants me to try Prolia. I am terrified of that, I have read studies on it, and sounds pretty awful.
I am an alternative type girl, just worried that I could be making some mistakes by NOT taking some of these drugs.
I walk every day, TRY to do weights, don't eat dairy or wheat, not much sugar. Any suggestions?

Thanks

 
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Old 12-11-2011, 06:18 PM   #2
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Re: New and Confused

I've just been on Reclast for the past 5 years and my osteopenia(early stage osteoporosis) has totally reversed so now my doc wants to switch me to Prolia as well. I just had way too many side effects to Recalst(the once a year IV).

My doc's office has told me that they are finding everyone loves Prolia and has almost no side effects from it. It is completely different from the bisphosphenates we've been using. Instead of a chemical it's a protein that tells the body to do the same thing the chemical did but this is far more natural. It mimics the body's way of putting more calcium into the bones....that is what his nurse said. I take a biologic drug for Ra and have yet to have a side effect in 3 years on the stuff so I am sold on biologic drugs.

I plan on trying it when my 1 year post-Reclast is over(March). I take 3000IU's of Vit. D everyday and a minimum of 1000mgs. of calcium but like you, I lost my ovaries at 32 and it hasn't been enough. I've also had both knees replaced and just last week read a study that showed that people with joint implants in hips or knees did much better if they were treated for osteoporosis after surgery......the implants didn't loosen nearly as fast. That is good news for me.

I'll let you know what it's like if you don't try it before I do.

Jen

 
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Old 12-11-2011, 07:12 PM   #3
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Re: New and Confused

Quote:
Originally Posted by nightwinds View Post
Hi, first post to this board, I found it because I am desperate.
I am 50 years old and have had osteoporosis for 15 years. I had my ovaries out at 33 due to cancer. Since that time I have fought the doctors on taking medications, but have had to succumb due to my bones declining. I am already at T -3.3
I took fosomax, then switched to Actonel, for almost 5 years. Now I have severe GERD, so he now wants me to try Prolia. I am terrified of that, I have read studies on it, and sounds pretty awful.
I am an alternative type girl, just worried that I could be making some mistakes by NOT taking some of these drugs.
I walk every day, TRY to do weights, don't eat dairy or wheat, not much sugar. Any suggestions?

Thanks
I too had my ovaries out at the age of 33 (six years ago for me) but for severe endometriosis. I am just wondering, was your cancer estrogen receptor positive? If not do you or could you take a form of hormone replacement? I have read somewhere that post menopausal women do not have much improvement in bone density with calcium and vitamin D alone, but do with hormone replacement (you have to weigh the other risks of taking that though, but one option is evista which acts like a hormone but isnt). I have been able to stave off too much bone loss with the Vivelle Dot (a patch that does not have to be taken orally or go through the liver; it goes through the skin directly to the bloodstream). I have taken a bioidentical form of testosterone for women off and on but it builds up so fast in my body I have to take long breaks from it. I also tried miacalcin (calcitonin) years ago and it helped improve spinal scores slightly but after a year I had to get off due to sinus issues on it. Since then I have not been on any drugs other than my hrt (and thyroid meds). I havent broken anything yet but am having low back discomfort (not really pain) due to being "bumped" off my bike by a mini van last summer. Have you had any fractures since your diagnosis? My scores are close to where yours are (-3.0 in spine and -1.6 in hips; was -3.2 spine and -1.8 at beginning of diagnosis in 2006). I too refuse to take the drugs. My grandma was deathly sick from fosomax and I have a very very sensitive system. I too am worried being only 39 with low scores and what the future holds, but I just can't yet bring myself to take those drugs. I have not heard of Prolia. I will have to look that one up. Wish I could be of more help but just know you are not alone!

 
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Old 12-12-2011, 08:00 AM   #4
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Re: New and Confused

HI Nightwinds, welcome to the board . If you are looking for an alternative way to treat your osteo do some research on strontium citrate. Its a natural substance with few side effects and has helped many people with their density. I've been taking it for over 5 years and have seen density gains with each DEXA, without any side effects t all. If you strontium citrate in the search box at the top left on the page you find many threads discussing it. take care...phyllis
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