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My Experience on Evenity for Treating Osteoporosis
Osteoporosis & Bone Health | Last Active: 1 day ago | Replies (1085)Comment receiving replies
@katgirl it helps to see an endocrinologist. Was it a primary care doctor who prescribed Reclast? Insurance companies persist in covering Reclast (and Fosamax) and Prolia as front line because they are cheaper, when it is better to start with an anabolic like Forteo or Tymlos, or start with Evenity (which is anabolic at first and then more anti-resorptive).
Reclast will reduce the effectiveness of anabolics to some extent so that is why the sequence of anabolic first is important. Also, Reclast is limited ideally to 3-5 years. If you do do an anabolic, you will need Reclast afterwards to "lock in gains." Furthermore, getting off Prolia requires Reclast to avoid rebound loss of bone density and increase in fractures. As you can see, you can run out of time for Reclast.
If your are borderline or have very mild osteoporosis the course might be different and you could even consider natural approaches. If your DEXA scores are concerning, I would cancel the Reclast and try to get on an anabolic. That's me- I am just another patient- so consult with an endo.
Forteo and Tymlos work through the parathyroid. Evenity works by inhibiting sclerostin. People born with low sclerostin have very thick bones which gave researchers the idea.
I like Ben Leder's videos (he has one on OsteoBoston and another one entitlted "Combination and Sequential Approaches to Osteoporosis"). The other resource many of us use is Keith McCormick's "Great Bones," a 700 page book useful for reference that includes both meds and holistic methods. McCormick also does consultation. He is a chiropractor specializing in osteoporosis. His website is osteonaturals.com.
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Yes, it was a primary care doctor who recommended this.
I was shocked to discover I had osteoporosis, and so first asked if I could try to handle this without medication (ie address vitamin D deficiency, up my calcium etc etc) and she said if I did that it would be two years until my next scan and what if that didn't work and my osteoporosis in the meantime got worse. And here is my big regret for the entire appointment: (I don't always process in the moment, so people say things and I respond to them but haven't really understood what was said until hours, sometimes days later) she then said, "I could refer you to the osteoporosis clinic but I have no idea how long it will take you to get in and they are probably going to say the same thing: use medication". Yes, I now wish I'd asked for the referral. But here is my fear with that: I don't know how much longer the ACA is going to be around (I am self employed and buy my own insurance through the marketplace.). If the ACA goes away, I never get health insurance again with all of my many preexisting conditions. So, maybe better to at least get one guaranteed dose of reclast than nothing at all? I have no idea if it will take more than a year to get into the Osteoporosis clinic or if my doctor will even back track and let me do that after already scheduling the recast. What I do know is that my doctor put in an order for me to receive a colonoscopy 14 months ago and I STILL haven't been given an appointment for that! So it might be quite a wait.
Here are the results of my scan:
FINDINGS:
BMD values are reported in units of g/cm2.
Hips:
- Left femoral neck BMD = 0.702; T-score = -2.4 (almost osteoporosis)
Lumbar Spine:
- L1-L4 BMD = 0.809; T-score = -3.1. (definitely osteoporosis)
Trabecular Bone Score (TBS):
- L1-L4 TBS = 1.319, corresponding to normal bone microarchitecture
TBS-adjusted FRAX: Estimated 10-year probability for:
- Major osteoporosis-related fracture = 8.6%
- Hip fracture = 1.4%
Based on the above results (TBS: barely in the normal range, but still in the normal range, hip: osteopenia but very nearly osteoporosis, spine: definitely osteoporosis) I don't know if insurance would pay for anything else besides reclast.
I came onto this website solely to find out about side effects of reclast and was shocked to see how much I didn't know about Osteoporosis treatment and how I had never been told about any other medications.
I am a very fit and active person, but believe the following factors may have lead to my early osteoporosis:
1) I went undiagnosed with celiac disease for many years--I'm sure this affected my absorption of nutrients like CA and Vitamin D. (I have now been GF for over a decade)
2) I have been on Prilosec (a PPI) for YEARS. None of my GI docs ever mentioned it causes an increased risk for osteoporosis
3) I have low vitamin D
4) I am dairy free and this combined with the fact that most GF bread/cereals are not fortified with vitamins and minerals means I have not been getting enough calcium
5) I am small: 5'5" and 118lbs
6) I did not use HRT for menopause. Big regret here. And no doctor ever talked to me about menopause or the benefits of HRT. ( I have no idea when I actually finished menopause because I had a hysterectomy at 39. ). I am of the generation that watched my mother almost lose her mind when they ripped her off of HRT back in the day because of the supposed increased cancer risk. So, I just assumed HRT was bad. And now they have backtracked on all of that. But since I don't know when I went through menopause, I don't know if I'd add hormones back in at this point.
Anyway, this is probably more than any of you needed to know.
Part of me realizes it would probably be prudent to wait and try to get into a specialist.
But part of me is afraid of waiting only to be given the same treatment plan. And a big part of me is scared that in 2026 I won't have health insurance at all if the ACA is dismantled.
Anyway, I am so grateful for finding this site and discovering how much I didn't know before I make a final decsion!