Struggling with making an osteoporosis treatment decision
I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.
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@ellerbracke I know exactly how you feel. I wasted a little over a year trying to go natural with exercise, calcium, protein, D3, etc. and all I got was worse bones. We have to do something. I have heard of very few people who were able to achieve an improvement without medications.
JK
I have reclast injections. so far no side effects. The beta blocker how ever is a differant story. Weight gain being one of them.
In terms of weight gain, the beta-blocker has had no effect. My weight has stayed exactly the same. I am, however, on a low dose (25mg) of metoprolol every day.
Reclast has been suggested as an option. Right now, I prefer staying with the side effects I've grown accustomed to. My doctor told me because I am thin, I would be able to get away with an infusion of Reclast every 18 months as it would stay in the system that long. I also prefer the speed and ease of an injection as opposed to drug infusion via intravenous. Often routine bloodwork gives me localized phlebitis so this method worries me.
Good to know you tolerate Reclast.
To Jk - you can add my 67 year old good friend to the short list of women who improved their osteoporosis naturally. Her dexa scan proved it. But then she stopped the regimen because it was too intense to adopt as a lifestyle. Her numbers are bad again, no decisions made on moving forward. She has been forever exercising daily with weight bearing and with what I call the ‘spawn of the devil’, the elliptical machine.
You can stop meds. First you have to go on a "relay" drug (if in my case I decided I wanted "off" Prolia) it would be Reclast or Aclasta as its called in Canada). After that, I could stop. The thing is, even when you stop taking bisphosphonates, I believe those drugs remain in your bone for years.
Osteoporosis is a disease which should be treated. If you have high blood pressure, you don't just stop taking meds.
And then there is the "F" word: Fractures. I fear fracturing. I already deal with limitations from osteoarthritis and most likely a hip replacement lies in the not too distant future. I have a n older husband with very serious health issues, no children and family in other cities. So, need to remain independent and not wheelchair bound for as long as possible. So will have to take my chances with these drugs (and I worry about these meds too). Always individual decisions when weighing risk vs benefit. Good luck to all of us.
@chocoholic WOW, someone did it! I am hoping for great results from Tymlos but then I have to go on something else to retain those results.
I am thinking of buying an elliptical machine but they really are quite bulky. I actually like them though, I used to use one at my health club a lot.
@windyshores I understand the need to be independent when you don't have relatives close by. I was just thinking of that today. My brother-in-law is having some problems and my sister needed some help. Her daughter lives in the same town, about 5 minutes away from her so she was able to be there to help. My son and daughter both live in other states so that would be a problem for me.
JK
Hi. Can you tell me about your friend's entire regimen? I went plant-based 8 years ago and ran half marathons and weight trained, but I still had 12 fractures over the course of the past decade. I'm 64 now and pretty fit, but on the slender side. My endocrinologist said that all of my interventions likely made my severe osteopenia in my lower body (I only had osteopenia in my lower body; it was better than my upper body, probably due to pounding from running) and my severe osteoporosis in my wrists "less bad." But she also said that my interventions were no match for the amount of bone loss I was experiencing, so I took her firm advice and went with the Reclast infusion in August 2021 (with minimal and transitory side effects). I'm wondering if your friend's regimen included something I missed. I'd like to supplement the Reclast with as many lifestyle interventions as possible. I'd be grateful to hear about her regimen in detail. I'm already weight training and jogging in the pool (not cleared for running yet, as I'm still healing from percutaneous pinning 9 months out from surgery, with three screws in my left femoral neck). Thanks for posting about your friend. I think a holistic approach for many of us -- the best that science has to offer, PLUS whatever lifestyle interventions we can adopt-- offers us the best chance of staying healthy and strong and mobile. My 94-year-old mother is in a wheelchair after breaking her hip four times. It's a fate I do not want to befall me!
Hi Susanop. I asked her, and she said she did the elliptical 4 days/week along with weight bearing exercises, and took (over the counter) D3 and calcium. Sounds like the needed amount and time of all the exercising is what got to her. She continues some of them to stay in shape, however, but it doesn’t command the strict time/conformity to a schedule like before. I think she had challenged herself and fought the good fight, but burned out. My hat is off to her. 🙂
Thanks for this. Tell your friend that I did far more than that in terms of exercise, as well as the D3 and calcium, and it still wasn't enough to turn the tide in my bones' favor. Too many factors working against us! I really appreciate your time and the info. Best to you both.
Hello. I am going through the same thing. I am at a negative 3.4 in my spine a negative 2.6 in my hip. I am 67 years old and the endocrinologist also suggested evenity
I've done a bit of research and even though it is relatively new I prefer getting a shot once a month for a year opposed to giving myself a shot daily for 2 years
I know a couple of people who were on for forteo and their teeth started falling out
All of these drugs have severe side effects but it doesn't mean that we will be getting all of them. It appears that our choices are the lesser of the evils so I believe if my insurance or the infusion center covers a little bit more than my thousand dollar deductible then I will be trying evenity.