My recent test (5 year interval) showed mild osteopenia. Since I have had RA since age 19, I am thrilled beyond belief that I have only just begun to show problems. I have chronic Vit. D deficiency, hypothyroid and had surgery for hyperparathyroid a couple of years ago. I have finally decided to do something about this. H and I joined the Y and I have begun stationary bicycle. We did a tai chi class today, my very first class of the type ever, and I enjoyed it. I may try some light weighlifting I would prefer not to take meds so I am also trying to eat more fish - bought salmon on the way home for dinner. I don’t take extra calcium and will discuss this with my doctor.
I have been watching this thread to learn what type of medications and treatments are available if I have to go that route.
I REALLY hate that all the meds come with what seems like more than average risk. I will have an appt later this summer to recheck my numbers - which are not good - but I refused to take the Fosamax my doc recommended at last visit. I’m going to be more aggressive in not accepting “what everyone else takes and seem to do fine with”.
^^ I’m with you! I’m glad I wound up with a doc (fired my first one) who is on board with my philosophy, but won’t let me put myself too much at risk. Also, she reminds me that bone density isn’t the only marker (it’s the only easy one, though) and even with poor density, your bones can be fairly good.
I’m about 5’5” and have bigger and heavier bones that my mom or sisters but am still at risk for bone density problems and really want to do what I can to keep my bones strong. I’m not happy with what I have heard about the Rx for strengthening bones either. Scary stuff!
I’m also of the camp of “just because this is the thing everyone’s doing now, doesn’t mean I’m going to.” There is a lot of fadishness in medicine, and docs afraid of going against the current assumptions. My doc, whom I see very infrequently, is open to my idiosyncrasies because my H used to be a doc and she knows I understand the issues fairly well. Haven’t had a bone density test yet, and will consider when it’s next suggested. I have been somewhat overweight most of adult life, and I get a lot of exercise and do leg and hand weights, so I really am not anticipating a lot of problems.
The FREEDOM Trial, which studied Prolia use in postmenopausal women for 3 years, found very little reduction in fracture risk. Vertebral and hip fractures were reduced 4.8% and 0.3% — meaning for 100 women they treated, only 5 saw fewer vertebral fractures than you’d expect with a placebo, and not even one woman was spared from a hip fracture by the drug. Given that hip fractures are considerably more harmful than vertebral fractures, these are minimal benefits indeed.
Although gains in bone density were observed, those gains were lost within 1 year of halting the drug (Cummings et al., 2017).
Furthermore, once they stopped using Prolia, patients’ risk of vertebral fracture quickly (<1–2 years) reverted to the same risk seen in those who’d never taken the drug in the first place (Cummings et al., 2017). They also lost a significant amount of the bone they’d gained by using Prolia—35.5% of the total gain in the spine, 44.6% of the total gain in the femoral neck, and 103.3% in the total hip (Zanchetta et al., 2017). In other words, the drug offered no lasting benefit.
Much more concerning: the finding that patients were more susceptible to having multiple vertebral fractures after discontinuing Prolia than patients who’d never taken the drug at all — and it was especially high in those who’d had such fractures prior to going on the drug in the first place (Cummings et al., 2017; Anastasilakis et al., 2017). This finding confirmed a number of earlier case reports of “rebound fractures” in patients who had discontinued Prolia within the preceding 12 months. Researchers speculated such fractures were a consequence of sudden renewal of bone resorption after the drug was stopped in combination with the absence of repair mechanisms during its use (Anastasilakis et al., 2017; Lamy et al., 2017; Polyzos & Terpos, 2016).
I got the impression from my doc that she is no longer prescribing Prolia. That’s what bothers me- there’s the “next great thing” and then a couple years later “Whoops. Not so fast.”
I did continuing education a few years ago on these drugs and frankly none of them were good. The marketing of them to doctors is great though.
The biphosphonates may increase density but don’t actually make the bone stronger. There is a difference between bone density and bone strength and they don’t equate to one another.
I am a mom and am on prolia injection. Got the first one. has to be taken every 6 months. Cannot stop it once started for a few years at least. I take 5000 units vit D and calcium 1 gm twice a day. I have not time for weights etc but try to walk. My GYn said NO HRT as doesnt rebuild bone. prolia advised by by endocrinologist. Approval for prolia did take time and cost be 200$ after insurance paid. Keeping fingers crossed
^^ My first thought, too, abasket. LOL. BUT- I’ve read enough on these meds to know HRT plays into it. I had one Prolia injection and then called it quits. I didn’t like how I felt on it. I think Forteo is the best med, but it’s expensive (I managed to get it really low cost through a Vanderbilt/drug company subsidy) and it’s daily injections. You can only take it for 2 years, though.
how long ago did you quit prolia and how many injections did you take ? any fractures after stopping> hope not… my endocrine is supposedly one of the best but didnt offer forteo
Ask your doctor what the absolute risk reduction is vs the relative risk reduction of these drugs.
I looked it up for Tymlos (a new drug) in the full prescribing information. It is meant for those who have already had a fracture.:
" The relative risk reduction in new vertebral fractures at 25 months was 87% for
patients treated with TYMLOS then alendronate, compared to patients treated with placebo then
alendronate, and the absolute risk reduction was 3.9% (Table 2). "
Relative risk reduction means the percentage of percentage difference between those that took placebo and those that took the drug who got fractures during the treatment period. (4.4% placebo, 0.6 % drug)
So there was a 87% decrease in relative fracture risk! Great number to advertise on.
But consider that less than 5 women out of 100 got a fracture who didn’t take anything! (I personally would go with the 95 and avoid the side effects)
The 3.9 % absolute risk number doesn’t sound so impressive does it?
That means 4 women out of 100 appeared to get any benefit from the drug.
wow! havent heard of tymlos yet. wonder how it will be if I do not continue with prolia injections. They seemed pretty adamant that stopping will greatly increase risk of fracture
