My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

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 Bones, Joints & Muscles group.

@windyshores

@angie13 do you have high risk for stroke or heart attack?

Have you considered Tymlos? It does the same thing as Forteo but some of us do better in terms of side effects with Tymlos, because the pen has "clicks" unlike Forteo, which is only one (full) dose. I started with two clicks and moved up slowly and am now on 6 or 7. A full dose is 8 but my doc is fine even with 6. I am guided by side effects.

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Will review Tymlos, thank you. My family history has heart issues.

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@angie13

@arlene 7, I am new to Mayo Clinic Connect and I am not sure how this works or how to continue the discussions. My doctor has suggested Evenity or Prolia. I have been on Forteo and did not due well and was also on Boniva for a while. How did the Evenity work out for you. Were there any side effects, are you doing okay now?
Figured out I needed the @

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I just finished my 1 year on Evenity. Ill do my new DEXA scan on June 24 and will report if it helped and how much. I had zero side effects. Just a sore arm on injection day. If you need it do it! Fractures are worse. My spine was the issue and I had a compression fracture last year which prompted me to start Evenity. I will go to Prolia after next month.

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Thank you so much. Good luck with the DEXA scan.

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@angie13

Will review Tymlos, thank you. My family history has heart issues.

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My family has heart issues too, and I have both afib and a murmur. I would still consider Evenity. But because Evenity is a newer drug, and also suppresses bone turnover, I chose to do Tymlos first. Tymlos grows bone but does not suppress turnover. I will try Evenity after Tymlos if my density does not improve on the Tymlos.

I read that Evenity "turbocharges" bone density because of the combination of bone growing and turnover suppression.

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I have been on Evenity for 7 months and had few side effects. The endcrinologist is recommending Prolia when I go off Evenity. I am looking for alternatives and considering HRT (Hormone Replacement Therapy) to stop on-going bone loss. I am 76 and have had one broken bone prior to Evenity with a DEXA score of -2.67. Has anyone had any experience with HRT for bone loss after the age of 60?

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@lbmorgan44

I have been on Evenity for 7 months and had few side effects. The endcrinologist is recommending Prolia when I go off Evenity. I am looking for alternatives and considering HRT (Hormone Replacement Therapy) to stop on-going bone loss. I am 76 and have had one broken bone prior to Evenity with a DEXA score of -2.67. Has anyone had any experience with HRT for bone loss after the age of 60?

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@lbmorgan44 Have you considered Reclast instead of Prolia? The same company, Amgen, makes Evenity and Prolia so it seems a lot of folks are doing that combo. But you cannot just stop Prolia, because there is a quick drop in density when you do, according to doctors I know. On the other hand, Reclast may be able to be given in a partial dose and with proper monitoring, can be stopped and then started again when needed. Again that is what my doc said. Your bone density score is not that bad- just over the line of osteoporosis. Are they sure you broke that bone because of osteoporosis?

From the Mayo Clinic (excerpted) on risks of HRT – scroll down for risks over 60.
https://www.mayoclinic.org/diseases-conditions/menopause/in-depth/hormone-therapy/ART-20046372
What are the risks of hormone therapy?
In the largest clinical trial to date, hormone replacement therapy that consisted of an estrogen-progestin pill (Prempro) increased the risk of certain serious conditions, including:

Heart disease
Stroke
Blood clots
Breast cancer
Subsequent studies have suggested that these risks vary depending on:

Age. Women who begin hormone therapy at age 60 or older or more than 10 years from the onset of menopause are at greater risk of the above conditions. But if hormone therapy is started before the age of 60 or within 10 years of menopause, the benefits appear to outweigh the risks.
Type of hormone therapy. The risks of hormone therapy vary depending on whether estrogen is given alone or with progestin, and on the dose and type of estrogen.
Health history. Your family history and your personal medical history and risk of cancer, heart disease, stroke, blood clots, liver disease and osteoporosis are important factors in determining whether hormone replacement therapy is appropriate for you.

ps I have had hormone-driven breast cancer so cannot do HRT anyway…

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@windyshores

@lbmorgan44 Have you considered Reclast instead of Prolia? The same company, Amgen, makes Evenity and Prolia so it seems a lot of folks are doing that combo. But you cannot just stop Prolia, because there is a quick drop in density when you do, according to doctors I know. On the other hand, Reclast may be able to be given in a partial dose and with proper monitoring, can be stopped and then started again when needed. Again that is what my doc said. Your bone density score is not that bad- just over the line of osteoporosis. Are they sure you broke that bone because of osteoporosis?

From the Mayo Clinic (excerpted) on risks of HRT – scroll down for risks over 60.
https://www.mayoclinic.org/diseases-conditions/menopause/in-depth/hormone-therapy/ART-20046372
What are the risks of hormone therapy?
In the largest clinical trial to date, hormone replacement therapy that consisted of an estrogen-progestin pill (Prempro) increased the risk of certain serious conditions, including:

Heart disease
Stroke
Blood clots
Breast cancer
Subsequent studies have suggested that these risks vary depending on:

Age. Women who begin hormone therapy at age 60 or older or more than 10 years from the onset of menopause are at greater risk of the above conditions. But if hormone therapy is started before the age of 60 or within 10 years of menopause, the benefits appear to outweigh the risks.
Type of hormone therapy. The risks of hormone therapy vary depending on whether estrogen is given alone or with progestin, and on the dose and type of estrogen.
Health history. Your family history and your personal medical history and risk of cancer, heart disease, stroke, blood clots, liver disease and osteoporosis are important factors in determining whether hormone replacement therapy is appropriate for you.

ps I have had hormone-driven breast cancer so cannot do HRT anyway…

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Thank you for your well thought out reply.

I have considered Reclast. However, I was unable to tolerate Fosamax which is also a bisphosphonate.

Prolia has significant side effects and with the possibility of multiple spinal fractures when you go off of it in 3 to 5 years, I am inclined to avoid that medication.

There do not appear to be any studies showing whether repeating annual doses of Evenity will produce bone growth.

That leaves hormone replacement therapy (HRT), which has its own consequences as you pointed out.

All treatment options have consequences. I am weighing quality of life versus quantity of life as I look over all options.

Take care and thank you for your reply.

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@lbmorgan44

Thank you for your well thought out reply.

I have considered Reclast. However, I was unable to tolerate Fosamax which is also a bisphosphonate.

Prolia has significant side effects and with the possibility of multiple spinal fractures when you go off of it in 3 to 5 years, I am inclined to avoid that medication.

There do not appear to be any studies showing whether repeating annual doses of Evenity will produce bone growth.

That leaves hormone replacement therapy (HRT), which has its own consequences as you pointed out.

All treatment options have consequences. I am weighing quality of life versus quantity of life as I look over all options.

Take care and thank you for your reply.

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Was GERD the problem with Fosamax? Reclast at least doesn't cause that. As I wrote, my doc said if the current med brings enough improvement, Reclast could be given as a partial dose, things could be monitored, and unlike with Prolia, you can take a break.

What about Tymlos or Forteo.

I have no genetic risk for breast cancer and sometimes blame my few months on HRT for my estrogen-driven cancer. But that isn't really fair. Still, they don't seem to prescribe it for over 60. Maybe Evista?

I know you didn't ask for another response, but I can't help myself sometimes 🙂

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It was severe joint, muscle and bone pain that caused me to discontinue Fosamax. Reclast is a bisphosphonate and can cause the same side effects as Fosamax. I am reluctant to take Reclast because of that.

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@lbmorgan44

It was severe joint, muscle and bone pain that caused me to discontinue Fosamax. Reclast is a bisphosphonate and can cause the same side effects as Fosamax. I am reluctant to take Reclast because of that.

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Are you considering Tymlos or Forteo as well?

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Hi, I'm Connie, 74 yrs. old & have severe Osteoporosis. Fosamax wasn't working well enough and was suggested I go on Evenity for one year then they'll give me the IV reclast. Evenity has a big side effect of "Strokes" which is a huge concern. I have a healthy heart, so why do I want to risk my heart health? But do I want to risk falling and shattering a hip? So I've elected to try Evenity. I'm trying to be positive, but don't want to spend a year worrying about heart failure at some level. I'm glad I found this blog, other people's thoughts have eased my mind. Also, I'm having further conversations with my endocrinologist to see how they're going to monitor me throughout the year; a little hand holding will help….plus a lot of prayers. Thank you

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@windyshores

Are you considering Tymlos or Forteo as well?

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I am currently on Evenity which is in the same drug group as Tymlos and Forteo. I have read that Evenity is approved for use after Forteo or Tymlos; however, once Evenity is administered, you cannot go on Tymlos or Forteo.

My Endocrinologist is recommending Prolia after I complete the one-year course of Evenity. Prolia blocks the resorption of bone and will help retain the bone that is created from the use of Evenity. Note that Prolia also slows the entire bone remodeling process. Clinical trials for Prolia are 3-4 years long and it "might" be safe up to 8 years according to Mayo Clinic. Since Prolia does not build bone, when it is stopped there is a more rapid breakdown of bone which increases the risk for spinal fractures. After reading the negative reports on Prolia I am reluctant to take it.

What about going back on Evenity/Tymlos/Forteo after Prolia? The book Mayo Clinic on Osteoporosis by Anne Kearns, M.D., Ph.D. on page 163 states that taking Evenity/Tymlos/Forteo after stopping Prolia can be associated with limited improvements in bone density or even bone loss. It seems to me that going ON Prolia has significant consequences. Then going OFF Prolia becomes a dead end, at least for me.

Going on Prolia, for me, will give me a few quality years IF I have no side effects. Since there is nothing I can take when I go off of it, and bone loss is a given when going off Prolia, why would I take it in the first place?

What are the next choices and consequences when Prolia is no longer an option and I cannot tolerate the bisphosphonates (Fosamax and Reclast type drugs) and Tymlos Forteo and Evenity are also not options?

I am researching estrogen and estrogen-related medications to treat osteoporosis. There is Raloxifene/Evista in a class of drugs called Selective Estrogen Receptor Modulators (SERMs). This medication is supposed to improve bone density and prevent spinal fractures. It is not as effective on hips and wrist fractures. A drug called Duavee is in a different classification of drugs and helps maintain bone density and reduces the risk of fractures. It is used primarily to prevent osteoporosis, but not treat it. The risks of hormone therapy are lower for younger women than for those age 60 or older. These two estrogen-related medications carry the risk of deep vein thrombosis (DVT), blood clots in lungs and strokes.

I have always been active, eaten a well-balanced diet and have been taking calcium, Vitamin D along with other supplements as I watched my DEXA scores drop. Osteoporosis has no cure and all categories of mediations to stop bone loss or build new bone present their own challenges and significant consequences and have a limited timeframes for usage.

What I am seeking is quality of life, not longevity. Choosing from narrowing treatment options is also choosing how my final years will be spent. All choices have significant consequences. Given that, I can only make the best decision for my situation. I have a few more months of research before the year-long treatment of Evenity is completed and a decision must be made for the next step.

I plan to continue to post any information I find that has been well researched and might be helpful for those of us trying to make difficult decisions about our health.

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