Newly diagnosed

[Shinedown]

Just being newly diagnosed, I have heard and read nothing but horror stories regarding the medications used to treat osteoporosis. Can anyone relay any POSITIVE results they have had with meds? I do not want to take prescription meds for this but I'm sure that is where my doc is headed based on preliminary remarks. She said that people only post or talk about negative experiences but that isn't the norm. Thoughts? Thanks.

[HeronNS]

Can you tell us your situation, your t-score for example, and what your doctor feels is the best way forward for you? Circumstances alter cases, too, like age at diagnosis, severity of the bone thinning, whether you have suffered genuine fragility fractures and so on. People just on the borderline of osteoporosis may be able to reverse this through diet, exercise and a few supplements. Others may need medication but if they also do the so-called natural things they may not need to stay on medication for long.

Also there are different osteoporosis medications and some come with more risks than others.

[Shinedown in reply to HeronNS]

Thank you for your response. I don't mind sharing information - I'm 57 yrs old and my T-scores are -4.0 (spine), -3.3 (hip) and -3.3 (neck). So, obviously not good. The only reason I found out was because I had a stress fracture in my foot for no apparent reason, so a bone density test was ordered. I do understand that everyone's circumstances are different - I just want to know if anyone in this group has gotten any positive results (improvement and no awful side effects?) from the prescription meds. They all sound very risky and scary. My next follow-up with the doctor is in a few weeks for her to tell me her recommendation, which I believe will be meds based on my numbers. Thanks again.

[HeronNS in reply to Shinedown]

Those numbers are concerning. As I haven't taken any of the drugs I can't help in that regard, but I can tell you a little bit about two of them. Assuming your doctor doesn't start with one of the bisphoshonates, a type of drug now used for a number of years and about which more is known, your doctor may recommend teriparatide (Forteo or Forsteo) which at the moment is only used for two years. Because after the two years you would over time lose the benefits of this medication they always recommend following up with one of the more traditional medications, a bisphosphonate, I think to sort of "lock in" the improved bone density. And I always say, read up on what you can do for yourself - in your case I wouldn't suggest "instead of" and that's your decision anyway, but certainly "in addition to". I'll add the link to my story at the end of this.

The other drug which many have found a lot more problematic, but it agrees with some, is denosumab, also called Prolia. The problem with Prolia is if you have had as little as two doses of it and find it doesn't agree with you, side effects, you can't just discontinue it or you will experience rebound osteoporosis, a process which can lead to a situation worse than that which you started with. For that reason you need to start another medication right away if you stop taking Prolia. You'd have to agree to take Prolia with the expectation you will be on it for many years and you are quite young to be committing to something like that.

There is a new drug on the market (romosozumab or Evenity) which has a black box warning and with something like this there's no point taking something that has not yet been used for a long time and all the worms, so to speak, have crawled out of the woodwork! That was the problem with Prolia - effects on the immune system might have been considered a serious possibility but it seems the rebound osteoporosis wasn't anticipated and led to disastrous outcomes for many. Now the doctors should know enough to help avoid this situation.

In my account you'll get a few ideas about the sorts of things you can do for yourself. One thing, if you can get physiotherapy from someone familiar with treating patients with osteoporosis you could get some exercises to safely strengthen the muscles supporting your spine, as well as guidance on how to move in your daily life to avoid stressing the vertebrae.

Best wishes, and do keep in touch to let us know how you get on. 🍀

healthunlocked.com/pmrgcauk...