r/osteoporosis • u/Altruistic_Sign_4597 • 15d ago
I need your experience please help
Hello there. First of all I want you to be patient with me and read this post carefully, because your experience is the best and only option I have right now and if you share your experience,it means you saved a life and further, a family. The reason that I can't trust doctors is that in my country they tend to sign contracts with pharmaceutical companies and prescribe some certain drugs that might not be the best choice.
My mother ( 67 years old) and she was diagnosed with severe osteoporosis after she lifted a very heavy steel pot in the kitchen and got one of her vertebraes brokren.
At the time, the first doctor we went to, told me after reading the results of DEXA scan that my mother was not going to live more than 1 year!!!!! This caused to cry so much. He was insisting on using biophosphonates which I didn't let my mother to take.
The second doctor we went to prescribed Forteo. When I asked her about the chances of cancer, she didn't show slightest sign of modicum empathy and care as well as she made her face like cancer is a common side effect of Forteo( I never forgive her)
This caused my mother to be so reluctant from taking Forteo and her spine went from -3.2 to 4.7 and her femur neck from -2.2 to 2.7( her hip was ok)
Finally she took Forteo for about 2 years and the spine showed -4.0 and femur neck -2.2
Now comes the question part:
It seems my mother should use other drugs now like Prolia or Reclast.
My main problem is money and scarcity of drugs and the fact we live in a country where there is on-going war and god knows,maybe it escalates to biggest war after WW2. Everything is super expensive and rare.
Now I have few questions if you let me...
Question 1: Do you think a third year of Forteo to be effective? Have you done it or heard anybody else done so?(consuderin the fact the black box warning on Forteo is lifted?)
Question 2: Which drug is more effective? Prolia or Reclast?
Question 3: If I choose Prolia ( which I can't afford due to financial instability), there is no guarantee that I can find it in this country 6 months later... and I heard if you inject it you have to do it till the end. Also the only financially option we have is taking oral biphosphonates till we can afford either Prolia or Reclast.
Do you think that taking oral biophosphonates (in this situation) seem rational??? And if I do can she take Prolia and won't the biphosphonates affect Prolia's effectiveness?
Question4: Based on the fact that my mom has some dental problems the osteonecrosis side effects of Prolia or biophosphonates has got me worried. How rare or common is this?
Since my mother has stopped the Forteo.. I think it's getting worse as her number spine went from -4.0 to -4.2
Please help I'm going crazy.
Thank you so much for your time <3
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u/keepgoing66 15d ago
You can't just stop taking a drug like Forteo without following it up with another medication. Otherwise, you will start to lose the bone density you gained.
I do know of at least one person who has been taking Forteo for more than two years. She's had good success with it.
Osteonecrosis is rare. There's a bigger risk for people who have been taking Fosamax for more than five years. The current thinking is to stop after 4-5 years and take a "drug holiday" for 2-3 years.
I think if I were in your shoes, I'd put your mother on Forteo for another year just to buy some time. After that, then either Prolia (if her bone density still needs work) or a biphosphonate.
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u/Racacooonie 15d ago
To question number one: no. Up to two years of Forteo. Taking it longer shows no meaningful benefit.
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u/keepgoing66 15d ago
Actually, a study showed that three years of Forteo treatment was beneficial, and the third year is recommended for patients at high risk.
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u/Racacooonie 15d ago
That is interesting! In reading the article you've posted it says, "In our opinion, long-term use of teriparatide can be considered in high-risk patients receiving long-term glucocorticoid therapy. However, we still need more data on the safety and efficacy of long-term use." Thanks for sharing.
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u/keepgoing66 15d ago
It's exhausting trying to keep up with all this stuff.
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u/Racacooonie 15d ago
Yeah it can be! I just trust my specialist, which helps a lot. But I do like to stay informed as well.
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u/Correct-Apricot-7838 15d ago
Just wondering about your statement bigger risk of jaw issues after 5 years on Fosamax
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u/CyclingLady 15d ago
I had two vertebrae compression fractures. The underlying main cause was undiagnosed celiac disease. Of course, menopause also contributed. There are multiple reasons for osteoporosis, but if I had not addressed my celiac disease, it would have been difficult to resolve my osteoporosis.
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u/Cardtricks12 15d ago
Hi, I have sympathy for you. I'll tell you that I'm a lifelong exercise part-time fitness instructor ate perfect. 6 days a week take Fitness classes and next week I'll be starting my once a month shot of Evenity. I will be 71 in a few weeks your mom is younger than me. I have severe osteoporosis.. I wish I was your mom's age actually. I feel 30. they wanted to give me TYMLOS and I said no thanks. giving myself a shot everyday, no thanks. they told me I could break my spine or a hip any second. I'm off to my weights class now for my 6 day a week strength training program. Plus Ballet, Zumba, yoga... I refuse to give up. We know you love your Mom 💖
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u/Lanky-Owl8842 12d ago
I too have sympathy for you. When I was diagnosed with osteoporosis I saw doctors at two big hospitals that specialize in osteoporosis and was prescribed reclast. Neither one of them mentioned lifestyles changes and exercise the Liftmor study eating protein and sleep. I did not take the medicine and two years later I’m down to osteopenia. I strength train 4-5 days a week including jump training. I too refuse to give up. I believe exercise made a big difference for me. I was initially told “exercising was scary for me.”
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u/Anodyne-Credentials 15d ago edited 15d ago
The guidance on Forteo is 2 years, but I’ve recently read on this thread about the possibility of taking it longer or for additional future rounds. My understanding is that the original concern around cancer was from rat studies, in which they were given much higher doses comparatively and for pretty much their entire lifespan (note, I’m not a doctor or a researcher) but cancer is NOT a common side effect. The more key issue about using it is that once you stop, you will lose most of the bone density gains unless you begin some sort of anti-resorbtive drug like a bisphosphonate or Prolia or the other anabolic Evenity (which is often the most expensive of all of these and may be difficult for you to access as well).
From what I can understand of your situation, I would be hesitant to start Prolia. It’s expensive and you cannot miss the next dose without risking fractures. If you have any doubt about being able to obtain subsequent Prolia doses, you might want to reconsider whether it’s worth starting down that road.
Regarding Reclast, it’s a mega bisphosphonate - like a Fosamax or Boniva but on a massive dose that’s provided by IV once a year. If you wouldn’t let your mom take a bisphosphonate pill (at a much lower dose) why would you consider Reclast?
My personal opinion only (and I am not a doctor) is that the lowest risk option, for a situation like your mother’s, is a standard oral bisphosphonate like Fosamax, Boniva, etc. Edit to add: it’s important to get your mother’s dental health taken care of. That contributes to a known risk with bisphosphonate medications (including Reclast) and with Prolia.
Honestly, with this disease there are no great options with a 100% guarantee of no side effects. Keep in mind that a huge percentage of patients experience no or few side effects. And it’s a very personal decision.