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 Osteoporosis & Bone Health Support Group.

shula | @shula | Jan 15 6:32pm

In reply to @susanfalcon52 "I just had my 8th Evenity injections and have decided to go on Reclast next. I..." + (show)

Hi,
I will have my 8th Evenity in February and will probably go for Reclast. I also am concerned about tolerating the Reclast infusion and side effects. I empathize with your concerns. 🙏🏼😍❤️

Helen, Volunteer Mentor | @naturegirl5 | Jan 16 8:38am

In reply to @windyshores "How many injections have you all had? Those of you who have just posted about pain..." + (show)

I have had 3 months of Evenity injections and getting my 4th later this month (January, 2024). I already had joint pain in the lower back and hips so it's difficult to figure out if Evenity exacerbated that joint pain. I believe Evenity did exacerbate the joint pain in my thumbs but I'm willing to tolerate that given the benefits I need for Evenity. I had a sacral fracture last year that I was unaware of until it showed up on CT (CT performed for another reason). Despite the joint pain that comes and goes I exercise daily which includes walking. I do weightlifting a minimum of two times per week. Now that we have snow I'm going to x-country ski so I'll see how my joints feel after that.

nwyatt | @nwyatt | Jan 16 5:47pm

In reply to @kristie2 "I am going on my 6th month and have noticed more back and neck discomfort than..." + (show)

I'll be interested to know if your pain increases, stays the same or decreases after your next injection.

kristie2 | @kristie2 | Jan 16 7:27pm

In reply to @nwyatt "I'll be interested to know if your pain increases, stays the same or decreases after your..." + (show)

I will let you know.

speedweeder | @speedweeder | Jan 18 12:13pm

In reply to @lbmorgan44 "I am currently on Evenity which is in the same drug group as Tymlos and Forteo...." + (show)

@lbmorgan44

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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What was your final decision and why did you choose the course you decided on?

gravity3 | @gravity3 | Jan 19 6:52am

In reply to @shula "Hi, I will have my 8th Evenity in February and will probably go for Reclast. I..." + (show)

What were you taking before evenity?

muroberts | @muroberts | Jan 19 4:59pm

Had my third set of Evenity shots 1/11/24. Went to the ER 1/13/2024 because I got a rash all over my body and my blood pressure was high. My rheumatologist did not think this was related to my shots, but I'm very concerned about continuing with this medication. I'm also concerned about not continuing this medication, and potential bone breaks. Have others experienced rashes?

windyshores | @windyshores | Jan 20 5:26am

In reply to @muroberts "Had my third set of Evenity shots 1/11/24. Went to the ER 1/13/2024 because I got..." + (show)

@muroberts rashes are on the list of side effects for Evenity:
hives, itching, skin rash
Large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals

Why not switch to Tymlos or Forteo?

ps in my experience docs don't know much about side effects: I had chest tightness which is also listed as a side effect and my doc asked if I was having a panic attack!

susanfalcon52 | @susanfalcon52 | Jan 20 7:12am

In reply to @windyshores "@muroberts rashes are on the list of side effects for Evenity: hives, itching, skin rash Large,..." + (show)

Good grief. We really do get better, more honest, information on this site than at the doctor’s office.

muroberts | @muroberts | Jan 20 10:52am

In reply to @windyshores "@muroberts rashes are on the list of side effects for Evenity: hives, itching, skin rash Large,..." + (show)

Thank you for response and I will look at the other medications. My doctor doesn't appear too concerned that these we side effects, but ER doctor did think it could be side effects. I'm not sure there will be a next round of shots since some folks on-line have said side effects get worse with more shots.