I have finally reached the point where my doctor has recommended that I begin treatment for osteoporosis. The hope is to take bisphosonates for 2-3 years then a drug holiday if all goes well.
I have read a number of articles that state while generics are fine for many other conditions, with osteoporosis they have had a statistically significant difference in incidence of gastric issues and degree to which they slow bone loss. Although my doctor has proscribed brand Fosemax, my insurance company will only cover the generic. By their policy I am required to try the generic first. Even if it is more likely to bring me harm!!!
I would love to hear about other's experiences with both versions. I am working on an appeal at this point because if I'm finally going to do this (and I sure don't want to!), then I'd like to set myself up for as much success as possible especially since I'm hoping for maximum results over the shortest possible time. I could end up wasting those 2-3 years if the generic isn't as effective or if my GI system doesn't tolerate it or becomes harmed by it.
Administrators, do you have access to any peer reviewed articles that might support my appeal? If so I would be most grateful to have them.
I am a 64 year old woman in otherwise great health and have absolutely NO risk factors in my family or habits that would explain my getting osteoporosis. This is part of what has made accepting the diagnosis SO difficult to accept. I've literally done all the right things over the course of my life to prevent it. I'm also an RN who understands the diagnosis (now confirmed by DEXAs and doctors in two different states) so am trying to be my own best advocate, prepare well, and not keep my head buried in the sand.
Thank you,
LG
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Loveballet
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I can't help you with regard to the risks of generics. Would you be able to pay the difference in price it it's not too extreme? If,in fact, you really need the medication.
Were you assessed for secondary causes of osteoporosis?
I believe I have been assessed for secondary causes. Can you please tell me which tests I should have had for a proper secondary cause assessment? I have always been blessed with good health and only have one other issue. I've been on treatment for hypothyroidism for about 10 years and take Sythroid .75.
I'm 64 years old and have not one risk factor for osteoporosis which has made acceptance of it very difficult. I have done all the right things re: diet and weigh bearing exercise my whole life, don't smoke, never had a fracture, and have no family history of the disease. I've been monitored by DEXA scan since 2011 and because my FRAX score was so good, have been able to avoid medication.
We recently moved back to our home state after 5 years away and my new doctor is now recommending treatment. She recommended Tymlos for 2 years followed by Prolia then a bisphosphonate for the rest of my life. That blew me out of the water!!! I had never heard of Tymlos before so went about researching it. I learned that it is for severe osteoporosis and became absolutely terrified that my body was going to crumble at any moment! All that had ever been discussed previously was that I might at some point need to go on a bisphosphonates.
I decided to get a second opinion from my former trusted endocrinologist who had cared for me in my previous state. She was pretty surprised by the Tymlos recommendation along with committing me to medication for life at this point in my journey. She said she would recommend a 2-3 year trial of Fosemax followed by a drug holiday if the treatment offered sufficient gains. I went back to my new doctor and told her that that was the treatment protocol I'd prefer to start with. I don't think she was thrilled with my request but agreed.
Unfortunately my insurance company requires that I try a generic first and then if I have adverse effects, may be allowed to switch to the brand medication. All the research I've been able to find that has studied generics vs brand , specifically in relation to osteoporosis treatment, indicates a significantly higher rate of GI and other adverse events along with sometimes poorer bioavailability. This research suggests the cause is due to differences in disintegration and dissolution properties along with esophageal transit time due to different pharmaceutical attributes of generics manufactured in companies all around the world versus the highly standardized, highly tested and regulated brand medication. This has led to a high incidence of women discontinuing medication altogether. The research has also identified statistical differences in bone density improvement during the during equal time frames in the brand vs generic.
If I'm finally going to do this, I'd goal is to set myself up for as much success as possible. I don't want to take a generic bisphosphonate for 3 years and then find that I've only improved by bone density by 2% vs 4.5-5%.
My T-scores are: L-Spine -2.6, R Femoral Neck -2.6, R Total Hip -2.8, L Femoral Neck -2.6, L Total Hip -3.0. For some reason the results page says FRAX scores are not applicable.
Any help and encouraging advice will be greatly appreciated. I don't want to let fear rule my decision possibly at the cost of my health. Thank you,
To be honest I personally wouldn't touch a new bone med until it had been in general use for at least five years in order to see the majority of worms which will inevitably crawl out of the woodwork. Tymlos (abaloparatide) is relatively new. This article was written in 2017, so there should be a fair amount of information available now. Like teriparatide its effects are not permanent, and it cannot be used for more than two years so if you have embarked on the medication route, you'll have to take something else afterwards anyway.
I was diagnosed in January this year. There I was with my very painful and freshly broken arm, being scared into taking generic alendronate acid. I took it for four months with no problem actually taking it.
I stopped because I was feeling dreadful. None of the reflux or gut issues I had imagined but I went from being an energetic, fairly fit and active person to feeling like one of the frail little old ladies I’ve seen clinging onto their son or daughter’s arms for years when they come to visit their family over Christmas / New Year.
I felt really wobbly on my feet, I totally lost the urge to move, my vision was blurred so reading and watching TV were out. Life was miserable, really miserable.
In the end rightly or wrongly I decided to stop and go down the exercise and diet route. What was the point in taking something that was turning me into a shadow of my former self and making me feel like an invalid when I actually needed to be increasing my weight bearing exercise to strengthen my bones.
I originally thought of stopping for a break but my husband couldn’t see the point in starting again when I was back to my old self again. So I didn’t.
I decided to take my chances as I have read all the terrible things that can happen with all these drugs. I am 68 and have GCA, AS, and heart issues. I am on heart meds as well as Actemra. I also have Colitis. I bought a weighted vest as was recommended by HeronNS and I walk at the mall.
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Newly diagnosed with Osteoporosis 
