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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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I had 2 fractures in my lower back and 1 fracture in my upper back . Doctor did kyplasty surgery but I’m still having some back pain when I’m doing my work and have to stop and get in recliner for a little while and then start my work again
Is there a reason your doctor put you on Prolia? With fractures I would expect Forteo, Tymlos or Evenity to grow bone. I am doing Tymlos because I can adjust the dose and started low then moved up. With three fractures I would think you would need one of those three, not Prolia.
Did your doctor not carefully segue you off the Prolia? Even if you canceled the treatment due to insurance issues, the doctor needed to follow up to make sure you knew about what I think of as Prolia-take-back. No one should ever be insufficiently advised about this, or any, drug. I sometimes wonder what percentage of doctors need to repass medical licensing requirements as I've seen some really bad medicine happen to friends. All of which makes me A Medical Researcher out of Necessity when I face medical decisions.
@windyshores and others. If someone takes, say, Evenity or another non-bisphisohonate, is the only follow-up 'relay' Prolia or another anti-resorptive?
And if the answer is yes, doesn't the patient face all of the risks of taking these drugs that she tried to avoid by not taking them earlier? Including BRONJ, which seems to be occurring with greater frequency among patients receiving these drugs via injection or infusion. I'm wondering how can people make the best choices with the least risk if at the beginning of osteoporosis treatment?
First, as you have read, Evenity, Forteo and Tymlos apparently work best if used first.
I have been told that Reclast at a lower dose can be used to "lock in" gains from Tymlos but then I can take breaks as long as I am monitored. This would mean less chance of ONJ or atypical fractures. (Also the anabolics provide better bone quality, not just density, so the foundation is stronger.)
My doc may also save the second year of Tymlos OR a year of Evenity for use later if my bone loss worsens.
I agree that if one starts at, say 60, and does two years of, say Tymlos, followed by, say, Reclast (I would not do Prolia because it cannot be stopped w/out another drug) that by the time one is 67-72 or so it would seem you have run out of safe options. Meaning two years Tymlos plus 5-10 years Reclast.
I am hoping to follow McCormick's lead in doing meds (Tymlos, partial dose Reclast) and then try natural methods to maintain. When I was on cancer meds a natural approach was not wise. I have no idea if that is possible and I will do whatever is needed to avoid fractures since I have 7 in my spine.
ps We can apparently do Evenity after Tymlos or Forteo. Also the time limit of 2 years has been lifted for Forteo and it is probably it will be lifted for Tymlos as well since patients are not developing bone cancers.
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1 ReactionSorry @patmills I reread your post and see the fractures happened after Prolia, probably because there is a know risk of fractures if Prolia is stopped without adding a new medication. Bone density drops precipitously when you stop Prolia. So now perhaps you can go on Tymlos.
My Doctor now wants me to do Evenity for a year and then put me back on Prolia. The Evenity shots are so expensive it’s costing me $640.00 a month and Medicare covers the rest . I have stomach ulcers so I can’t take a pill form of medication for osteoporosis. Maybe she can put me on another shot instead of Prolia. I’m really frightened about taking the Evenity shots so many side effects.
If your income is low, Tymlos has a patient assistance program. I get mine for free. If you are interested I can give you details.
My doc won't use Prolia for me at all.
The same company- Amgen- makes both Evenity and Prolia. I am wondering if there is some pressure from Amgen for docs to prescribe Prolia to follow Evenity.
So the bisphosohonate can be given at a lower dose as a lock-in drug then. That would lessen the BRONJ risk well then, if it's dose-sensitive, which is reassuring.
@callalloo I have no idea if other docs are doing that for other patients. My doc is very nervous about giving me any med. But he does seem to think that lower dose may be protective.