Recently Diagnosed

[kouffman]

I was recently diagnosed with osteoporosis and the doctor recommended taking once monthly Boniva. I have never had a fracture and no one in my family has had osteoporosis or a bone fracture. I am 59 years old and active and have been in menopause for one year. I am scared to take any medication for a chronic condition and I am unsure what course of action to take. I do not want the osteoporosis to get worse and to possibly have a fracture. The doctor feels that I got osteoporosis at my age because I had amenorrhea for 5.5 years in my late 20's to early 30's. She said that the years that I needed to build bone was cut short because of the amenorrhea. Should I take medication now? Wait a few years? Any suggestions would be helpful as I am very scared

[Met00]

It is scary when we're first diagnosed, isn't it? I was diagnosed about the same age as you, don't take meds, and 8 years later haven't had any fractures so far. I'm careful to avoid ice, wet leaves and trip hazards, but otherwise am relying on healthy eating, supplements and exercise (the latter not going so well!). Would you be happy to share your t-scores and fracture risk score?

[kouffman in reply to Met00]

Thank you so much for replying. That is wonderful that you have not had any fractures in 8 years and that you do not take medication. What is the fracture risk score please? What I see on the Dexa Axial Skeleton screening is: 10-year fracture risk: FRAX not reported because some t-score for spine total or hip total or femoral neck at or below -2.5? My T scores according to Dexa axial skeleton screening are: AP spine: -2.5, Femoral Neck -3.1, Total Hip -2.8

[Met00 in reply to kouffman]

The fracture risk score is FRAX that they've told you hasn't been reported. That's shocking, as a decision about whether or not to offer medication is supposed to be based on FRAX, not on t-scores. When I was first diagnosed, my spine t-score was -3.2, hip -2.3, but I was told I didn't necessarily need to take meds because FRAX calculated my fracture risk as lower than to be of concern at that point. You can work out your own fracture risk with the FRAX tool: sheffield.ac.uk/FRAX/tool.a.... Make sure you choose the right country/ethnicity from the drop-down box under Calculation Tool at the top and complete the other details.

[kouffman in reply to Met00]

Thank you so much for that information. My FRAX score based on that calculator link you sent me is: 10 year probability of fracture based on BMD major osteoporotic is 13% and hip fracture is 4%

[dcdream]

Most importantly, try to read as much as possible and recognize your Dexi Scan scores do not tell the entire picture and do not define you nor your future. I was diagnosed at age 58 with osteoporosis and 10 years later have not fallen, fractured, etc. and I do not take meds. I do exercise everyday with yoga, pilates, walking and weights, eat a healthy diet, take appropriate supplements, collagen and met with a physical therapist to develop an appropriate work out routine, took a class in proper body mechanics, as well as, balance exercises. I live a very active life. Avoiding falling is crucial as you age. Don't let fear guide you, there's plenty of research out there to help guide you.

[kouffman in reply to dcdream]

Thank you so much for replying. That is great news that you have been fine 10 years after the diagnosis. I like that you don't take meds. My doctors have said that if you don't take meds that my osteoporosis will get worse? Is that factual?

[dcdream in reply to kouffman]

Yes, my scores continued to decline since diagnosed. I fully expected that. However, just started the past 6 months to take this very serious and implemented many changes noted in my comments. My mom did all the meds and started fracturing in her mid-80's. She also developed all the usual side effects. She also lost 6 inches since her late 80's and had a reclast infusion last year, which may have triggered calcifications impacting her heart. She needs valve replacement this week. That said, I will continue to avoid meds until a better treatment plan is available drug wise that will have less side effects and actually prove to stop fracturing at rates acceptable to me. Lots of research is available on line and it will help you determine what is right for you and your body.

[kouffman in reply to dcdream]

Thank you so much for your help and best to you and to your Mom

[dcdream in reply to kouffman]

Good luck to you as well. Once we get over the initial shock of diagnosis, it becomes easier to determine how to proceed and if/when you want to take meds.

[kouffman in reply to dcdream]

Thank you

[Trish5]

I think it depends on your T score as to whether or not the doctor will give you med. Mine are quite bad. T-3.8 in the back and T-3.0 in the hip. My doctor wanted to put me on Fosamax, but because I have a high PTH which is the thyroid hormone, I'm not allowed to take this medication. I also have high calcium ..... I've had two exams for thyroid and they are both clear of tumours so now we have to find what is causing high PTH before we can treat the osteoporosis. I'm 68, by the way. Very active and don't take any medication yet till I have more tests.

[kouffman in reply to Trish5]

Thank you for replying Trish and best of luck to you great that you are tumor-free and continued best of luck with the follow-up tests.

[Kulbir108]

do the research … that is a private decision !!! This forum has great insights

[Pretsini]

Hi, I was prescribed the same med and schedule as you, with a 10 year fracture risk of 1.7%, and told to take it for three years. I did try the Boniva and decided that the cure was worse than the disease because I got intense muscle pain in my neck and upper torso and had trouble sleeping. Taking NSAIDs like ibuprofen is not necessarily a good idea while on Boniva, either, though some do anyway.

My other concern is that there is no game plan for when the three years are up. I would rather put in the effort to live a healthy lifestyle and use that as a long term plan. There is so much about the human body we still do not know.

Like you, I was unpleasantly surprised to learn this, and if it helps, get a second opinion. Sounds like you did not get a complete report (I did not, either).

[kouffman in reply to Pretsini]

Thank you Pretsini. Your thinking has been my thinking as well regarding the long-term medication plan. I am concerned if starting the medication regime at 59 what will happen at age 99? That is 40 years to treat the condition so I, too, would like to delay and perhaps even forego, the treatment for as long a period as possible. In addition, hopefully there will be more effective medications developed and approved. Thank you again for your email.

[Smithie49]

I too have been recently diagnosed with osteoporosis- spine : t - 3.6 left neck of femur t-1.8 and right t- 2.3.I've been in touch with the Royal Osteoporosis Society who gave me loads of advice and have bought a book recommended on this forum: Bones by Lara Pizzorno. Also the help given here has been wonderfully reassuring.

One GP I saw tried to bully me into taking alendronic acid, ignoring me when I told him I have solent reflux and difficulty swallowing tablets. I have decided to refuse meds and up my exercise, reduce alcohol and eat whatever I need to to improve my chances of avoiding bine fractures. Time will tell if I've done enough.

Good luck with your decisions.

[kouffman]

Thank you Smithie for your response. I wish you the best and thank you for the book recommendation which I will get!!!