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.

windyshores | @windyshores | Jul 17, 2023

In reply to @lashu "what if you have had previous molar extractions?" + (show)

@lashu my dentist said that since I have had two molar extractions that I am pretty much done and safe for meds for osteoporosis. But check with yours!

gretch19 | @gretch19 | Jul 17, 2023

This is all very helpful for me as I weigh the pros and cons of both Amgen drugs and decide on my course of action. None of the doctors I consulted with mentioned Forteo or Thymos. Only Evenity, Prolia and bisphosphonates. I also had difficulty getting my insurance company to approve Evenity or Prolia and now that I have finally been approved, I don't want to delay things any further. The bottom line is that, as you so well put it, there is no lasting cure, only a delay. I resisted taking any drugs for 8 years since my benchmark DEXA which revealed osteopenia. Now I have severe osteoporosis and I feel like I need to get on with a course of action. The recommended path is 1) Evenity followed by Prolia, or 2) Prolia by itself. Evenity with its black box warning scares me so much that I have put off starting anything for the past 6 months. The second option of Prolia alone may not be as effective in significantly raising my T scores, however it seems to be more widely recommended by friends and physicians. As someone who has always spent a great deal of care taking care of health and staying very active, I dread this decision.
I would greatly appreciated any shared experiences with Evenity and/or Prolia.

gretch19 | @gretch19 | Jul 17, 2023

Your post resonates so much with my plight. I have to decide between Evenity as a first course of treatment or straight to Prolia. You mentioned that Evenity contains sulfa, to which I too am allergic and have avoided for the last 30+ yrs. I searched the info for contraindications but did not see anything about sulfa. I even mentioned it to my physician who was not phased. Where did you see that it contains sulfa?

windyshores | @windyshores | Jul 17, 2023

@gretch19 Tymlos and Forteo are common, standard, bone-building medications that have been around for quite awhile. Evenity is relatively new and has both bone building and anti-resorptive properties. Bisphosphonates and Prolia are anti-resorptives.

I have seen two endocrinologists at a top hospital and top endocrinology dept. where major research is going on. These docs rarely use Prolia and only when someone cannot take anything else.

Once you stop Prolia there is a big drop in bone density and increase in fracture risk. The timing of following up with Reclast is very tricky, I was told. I know people are taking it for a long time but that brings risk of dental issues and atypical femur fracture at some point.

Tymlos and Forteo build quality bone. My docs follow it with Reclast or alendronate to "lock in" the gains and then we can be off meds for awhile.

The cancer warning was lifted from Tymlos and Forteo. Not a single human has gotten cancer from these meds.

You can also follow Evenity with Reclast. I believe studies are still being done.

gretch19 | @gretch19 | Jul 18, 2023

In reply to @windyshores "@gretch19 Tymlos and Forteo are common, standard, bone-building medications that have been around for quite awhile...." + (show)

That is my understanding as well after watching the recommended videos which were extremely informative. Since I found a Dr. who was able to get me approved for Evenity and since the renowned endocrinologists featured in the vids support its effectiveness, I will take my chances and start with Evenity and follow with Prolia or a bisphosphonate in a year. That seems to be the recommended sequencing. Hopefully in a year thy will have newer data and optimized treatments or strategies. Thank you for all your support. So glad I found this discussion blog

catalena | @catalena | Jul 19, 2023

In reply to @gretch19 "That is my understanding as well after watching the recommended videos which were extremely informative. Since..." + (show)

I’ll be starting Evenity very soon. I’ve had 4 spinal fractures. I feel that I’m out of time; can only hope that I’m not hard hit by side effects.

kathryn01 | @kathryn01 | Jul 19, 2023

Since starting Evenity 4 months ago, I have had an appreciable increase in blood pressure. All the medical contacts tell me that it’s not a side effect but nothing else has changed in my daily routine. Has anyone else had this experience?

susanfalcon52 | @susanfalcon52 | Jul 19, 2023

I will receive my third Evenity infusion next week. I have monitored my BP closely and no increase. I don’t seem to have any obvious side effects except that two days later - both times - I was tired.

birdie78 | @birdie78 | Jul 19, 2023

I have my 3rd injection tomorrow. I haven't had any side effects that interfere with my normal routine. Sometimes a bit itchy at the injection site so I quickly wipe the area with cool water to calm it since I have very sensitive skin.

lab54 | @lab54 | Jul 19, 2023

In reply to @windyshores "@lashu and @dreamjean1958 Evenity is both a bone builder and an anti-resorptive. According to Dr. McCormick..." + (show)

I was prescribed Prolia two years ago & had dental issues ever since. After the first injection, my dental specialists recommended not too continue with Prolia. Since taken Prolia, my body rejected my bone graft & had several infections with my teeth & gums. I have been in a lot of pain & unable too eat or chew properly. Had another bone density scan & was put on Evenity because my Osteoporosis had gotten worse. I hope & pray that Evenity doesn’t make my mouth issues worse. Evenity is a new drug & it doesn’t have the data like the others have. Has anyone had any dental issues on Osteoporosis medications? Would love too hear from you. Just had my first two injections of Evenity & concerned. Thank you!