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My Experience on Evenity for Treating Osteoporosis
Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".
I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.
The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.
My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.
My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.
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Adding here that it is important that your doc have experience and training in bone health, osteoporosis and drug sequencing. Make sure you ask him/her and also what the rational for starting with reclast. Do the research.
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1 Reaction@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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1 ReactionYes, 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!
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2 Reactions@katgirl I know you feel a lot of pressure about insurance changes and getting appointments and all but it is really best not to get into a rush with ostoporosis choices. Your bones don't disappear overnight.
There are many things to consider, way way beyond what your doctor told you. At least if you want the best result you can get.
My personal suggestions:
Don't put all your eggs in the seeing an endocrinologist basket. They will likely have more knowledge than a primary care doctor but few doctors are fully knowledgeable in osteoporosis care.
Instead continue to educate yourself as you already are so that you can evaluate what any doctor offers. I'm not saying this to discourage you from seeking the best doctors you can find. Please do.
I don't think we should start dispensing meds based on one DXA. Public health folks would probably hate that statement but still the DXAs are imperfect enough that tracking multiple DXAs is ideal. And then there is the new Echolight test that might be considered as another viewpoint to compare with the DXA.
Your scores are not low enough to be "an emergency must take action immediately" situation.
Sounds like you have a probable cause for osteoporosis with your history but everyone needs to be sure there are not other factors at play besides hormones. A good doc should check any other likely suspects.
As others have discussed, Reclast is not where I would start. It blunts the effectiveness of taking bone builders further down the road.
I would want to take a bone builder med first with your numbers. Build up more bone, new bone, more quickly than with an antiresorptive like Reclast.
Oral Alendronate the generic of Fosamax is a possible alternative to Reclast. Check out the cost, if it's inexpensive as I think it is that might ease your financial/insurance concerns. It would not be my first choice but it would be a reasonable alternative medically to Reclast in your situation.
Or do bioidentical hormones and weight training and change your diet. Your numbers are not so bad and it might be reasonable to try that. Of course you can do all of those and take meds.
There is much to think about if you choose to really dig into this and this site and others can be very helpful. Take a deep breath.
Best of luck
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2 ReactionsYour story is very valuable as women realize how little money/research has been allocated to studying women's health. Thank you.
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1 Reaction@katgirl I hope you can buy the book "Great Bones" by McCormick and watch some videos on You Tube (Ben Leder MD, Keith McCormick, OsteoBoston).
I think your -3.1 spinal score might qualify you for a bone builder: Tymlos, Forteo or Evenity. It really is worth it. You have time. That one Reclast will reduce the effectiveness of the bone builders.
Maybe you can convince your primary care doctor to prescribe while you wait for an appointment with an endocrinologist. They might have to do an authorization. Keith McCormick does consultations. He cannot order with insurance coverage but could maybe talk to your primary. Also get on a cancellation list with endo and call at 10am Mondays!!
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1 ReactionI am the same. That I did not go on HRT after my hysterectomy is my regret. It supposedly caused breast cancer. Been on Prolia for three years and it worked great for two years but this dexa showed no improvement. (-2.9 In lumbar) now I am being referred to an endocrinologist but interested in trying evenity. Not sure what is best.
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