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.
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
For what it's worth, and opinions can vary among doctors, my endocrinologist told me that Evista is not a good SERM ot osteoporosis drug. He said that it's being marketed as a two-for but does neither job well. Just one opinion but I toss it in here as you're in research mode. I truly wish there were better choices for osteoporosis drugs as all of them have issues, though some are worse than others. I think that the future for osteoporosis care will rely on more data than the DEXA results and maybe genetic testing can identify a more precise path for prevention and treatment for an individual.
Good evening Connie. I am in exactly the same place. I did two years of Tymlos without any side effects and my scores went down to Osteopenia. And then I came to a curve in the road. I am highly allergic to bisphosphonates. When I first started I was given Boniva. Within a month, I had to stop it and turn to Tymlos. Now, the only option that is not bisphosphonate is Prolia.
The side effects have been disturbing. I have had dental specialists review my X-rays and everything is fine. And if I do need dental work in the future, I can stop Prolia for a few weeks, then go back to Prolia. At least that is their recommendation. My question is this. How do you stop for a few weeks when Prolia is a twice a year injection?
Still searching for answers and perhaps a new option. Let's hold hands with each other on this complicated journey. What is your major concern?
May you be safe, protected, and free from inner and outer harm.
Chris
Chris are you allergic or sensitive? Are you sure it is the active medication? I ask because I can only take pills from certain manufacturers: I have neurological symptoms from some companies' meds.
Did you try an infusion? If so, with hydration, meds and slow infusion?
Would Benadryl before an infusion help or is your allergic reaction ongoing for days or weeks?
I am only asking because I am going to have to try an infused biphosphonate myself after Tymlos and tend to react to a lot of meds.
Thanks for the feedback on Evista. I have just begun research on the estrogen related drugs for osteoporosis. It is good to know your doctor has found it not to be that effective.
I agree that more than the DEXA results are needed to assess osteoporosis. My endocrinologist ordered several lab tests, but I am not clear on how they may or may not line up with DEXA results. Those are some of the questions I have at my next appointment.
I just finished my 1 year Evenity treatment. No side effects and no heart issues. I also have a healthy heart. Osteoporosis needs treatment. Fractures are worse than any side effect you can have as far as my opinion is concerned. Im waiting on my DEXA scan and than Ill start on Prolia. Im here for support if you need it. I just had 2 sore arms for a day or so and no other effects to speak of. Ill post my new scan results here when I get them on June 24
I'd like to know which tests he orders if you don't mind sharing. There are newer blood tests on the horizon to give more accurate info about bone health that could provide data to supplement the DEXA stuff.
My impression is that there is no stopping Prolia for a few weeks. (And I could be wrong .) At least without immediately going on a relay drug to try to prevent the bone loss triggered by discontinuing Prolia. For what it's worth, my endocrinologist has patients who were put on Prolia elsewhere and want to get off of it, and he begins the relay drug while still in Prolia if the drug is a bisphosphonate to try to alleviate the issues from quitting Prolia. And he does not prescribe Prolia himself any more.
I am curious about the statement, "once Evenity is administered, you cannot go on Tymlos or Forteo". Do you know the reason from what you have researched? Thank you for your help.
Thank you for your post. I have been on prolia for 11 years now and my bone scan has improved and feeling no real side effects that I am aware of. Would be very interested in your results after the year I of evenity. My endocrinologist recommended evenity for a year also, but I was concerned about the black box warning. I do not have a cardiac or stroke history but do have a blood clotting disorder, so I have been hesitant due to that.
I have the same question. So far in my research I have not found out the reason that Tymlos or Forteo cannot be taken after a course of Evenity. If it do find out I will be certain to post it.