Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
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Although Forteo was my doctor's first choice, I did not like the black box warning about osteosarcoma. That definitely factored into my decision to go with Prolia. (history of a variety of different types of cancer in my family including blood and bone cancers.)
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Also just reread the article that@jakedduck sent and noticed that Prolia increased my bone density in both the spine and hip to the same degree as Forteo (11.6% and 6.4%). And you can stay on Prolia for at least 10 years.
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@jakedduck1 meant to say
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I have severe osteoporosis. I am on my 3rd year of seeing a wellness coach at a local physical therapy place. I started doing an hour twice a week of strength and resistance training. Then I dropped to an hour a week and Medicare will pay for physical therapy for resistance training. So I do an hour with a wellness coach (individual training) and intense. Then 40 minutes with a physical therapist. Not on the same day. After 1 1/2 years with the wellness coach and a year with the physical therapist, it stopped the osteoporosis in my spine but not my hips. I cannot take the Boniva, Fosamax of the world. My only resort now is for Prolia. But my first bone scan was in 1999, the year I turned 50 and my spine scan was -1.44 then. . It took until 2018 to get to -2.5 in my spine. My total left hip was scanned in 2008 at -2.5 and in 2019 it was -3.4. I am still weighing whether I want Prolia at 70 years old.
Hi Suemer, I am scheduled to go on Tymlos. The studies on this drug are minimal, at best, and the side effects are dangerous. However, with a 4.6 T score and a knee that needs replacement, my choices are limited. I am also seeing a doctor who practices "functional" medicine and prescribing specific types of bone supplements. I am hopeful to take Tymlos for a short period of time. At 72, one fall to my hip and I will not recover. Sometimes, we must have the courage to do what seems unthinkable. I was told by 3 medical people, Prolea will not build bone but will prevent further bone loss. Unfortunately, in my case, I'm beyond prevention. Life is short and I would like to extend me quality as much as possible!🐱
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Hi @curlylocks not sure if you saw my post. I am on Prolia because I didn't like the potential serious side effects of Forteo. I am 64 and after one year my bone density in my hip and spine increased significantly. The endocrinologist who originally wanted me to go on Forteo was very pleased with the results. I had -3 .3 or so in the hip and equally bad number in the spine. So she has me continuing on on Prolia which is convenient in that it is only two injections a year.
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Here is an article Re: Forteo
I don’t know anything about it but thought this article was thought provoking.
Great info, @jakedduck1 It works against the immune system, which right off the bat tells me it is probably not appropriate for me. I don’t need to be less immune than the immunosuppressants already make me. Also, I read recently that when you are on immunosuppressants, you are at greater risk of cancer since your body’s ability to fight cancer off is part of your immune system also. Of course whenever a new drug is prescribed for me I run it by my transplant team to get their input and I am sure they would immediately say a big, resounding NO.
Do you have any statistics on how many transplant patients actually get cancer?
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So, I am almost 65 and have been on Prolia for 21 months. My hip score was almost as bad as yours. My fear of a hip fracture and loss of independence (I know someone who never got out of her wheelchair), outweighed my fear of Prolia. (I have posted on this blog before but one more time, my hip score improved by 6.5 % and spine by just under 12% after 1 year.
I have been on Prolia with very good results T score wise, but fell and fractured my foot in the winter and it took seven months to heal. My doctor is now putting me on Tymlos to build bone before resuming Prolia in the future (Prolia, my doctor told me inhibits healing if you fracture). I have opted for medication as the thought of losing my independence again is very undesirable, although my husband was helpful😊. Good luck in everyone’s journey
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Interesting article. I’ve been reading Dr. Browns stuff for over 20 years. Initially I followed her advice, as well as many other alternate advice gurus, regarding more natural ways to stave off osteoporosis. From age 42 to age 64, this all worked to slow down my bone loss. But finally it became clear that something more drastic was necessary. I have started Forteo to hopefully regain some of my bone loss. Unfortunately, no drugs are free of side effects. You always have to weigh the pros and cons for your own unique situation. In reality, even “natural” substances should be used only after understanding their impacts as well. Also, I always take advice from sites that are selling their own alternatives to prescription drugs with “a grain of salt”. They are not without bias … which is not to say, at all, that they are selling “snake oil” either. Only that we all must do the research to know what is the best for our own situations.
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Forteo was my doctor's first choice because the bone density increase is significant and fast. Believe the maximum amount of time to be on it is 18 months.
The maximum amount of time for Forteo is actually two years.
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I stubbornly refused to listen to my doctor's advice for years re taking medication for osteoporosis. I regret doing that. So much unnecessary bone loss.
Hi Sue 225, Unfortunately, Prolia is not strong enough for me. It prevents further bone loss, but does not replace bone. My T score, at 4.6, is too severe to take Prolia. I must build bone loss and that only can be done, more quickly, through a risky drug like Forteo or Tymlos. Two doctors have recommended Tymlos and I will begin treatment as soon as the nurse shows us how use the injections. Also, I will continue with my functional medicine doctor and his treatment along with his bone supplements. My goal is to stay on Tymlos a short time, not the full 18 mos. Only time will tell. I hope your choice of Prolia will be successful! Osteoporosis is a misunderstood medical condition by doctors and patients alike!
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Hi @curlylocks . The Prolia is working. It has allowed me to build bone (by slowing down the chewing up of bone by the osteoclasts: my version of the medical explanation). My bone density after one year on Prolia increased 11.5 % in the spine (I was something like-3.3 or 3.4 and similar in the hip. My endocrinologist also wanted me on Forteo to be followed with Prolia. But I said I'd prefer Prolia and now she seems quite happy with the results.
@jakedduck1 Leonard, this got by me but I am now trying to go over these posts re. osteoporosis so I finally saw it. I just googled and found this article:
What I do know is that since I had malignant lesions in my original liver I have an MRI yearly to make sure they did not metastasize. If at some point they do find cancer that originated with that the odds of survival are only 11% but I just figure that's not going to happen to me. I always figure that bad things won't happen to me but unfortunately I haven't been right a number of times. My odds have to change at some point.
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I’m not very knowledgeable about cancer and know nothing about transplants. I did read that The incidence of cancer in transplant patients is between 15-20% however I don’t know if those figures are accurate. Do you know if the chance of cancer decreases as time goes by? Where did the 11% figure come from? Is that for a specific type of cancer?
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@jakedduck1 The 11% came from my oncologist when I asked point-blank but I have confirmed that with online research. I think it’s a case of when it metastasizes it’s not as easy to pinpoint so more difficult to treat than if you had a primary cancer. My husband had prostrate cancer and with it also, if it recurred there would be a much lower chance of being able to eradicate it. It’s been three years on Monday since my transplant so I’m feeling that I’m pretty much out of the woods. Two more MRIs and they will consider it to not be a threat.
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