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.

trathfon62 | @trathfon62 | Apr 15, 2023

So did you ever take the Evenity?

susanfalcon52 | @susanfalcon52 | Apr 16, 2023

Any side effects from the Evenity?

dianestanley | @dianestanley | Apr 16, 2023

In reply to @susanfalcon52 "Any side effects from the Evenity?" + (show)

I will get my 9th Evenity shot this Friday. I am usually tired later after getting my shot. Sometimes, I may have a little bump on the back of my arms. The last time, I didn't even feel the nurse giving me the shot. I have had no complaints with the Evenity shots.

dianestanley | @dianestanley | Apr 16, 2023

In reply to @dianestanley "I will get my 9th Evenity shot this Friday. I am usually tired later after getting..." + (show)

Just make sure that you don't have any heart issues.

vistalady2014 | @vistalady2014 | Apr 16, 2023

I am glad I found this website and stories about people who are under treatment with Evenity. I am waiting for my insurance approval. I am nervous about this, but I am hoping for the best result.

tkdesign | @tkdesign | Apr 22, 2023

In reply to @galactica "Thank you so much for posting. My Dr. is pushing hard for me to go on..." + (show)

@galactica

Thank you so much for posting. My Dr. is pushing hard for me to go on Evenity. I have osteoporosis. I have some kidney issues and I have had a cracked tooth pulled in the past, bone loss in the jaw and another cracked tooth with a crown protecting it. Dr. is telling me that the atypical femur factures, necrosis of the jaw and side effects are rare and I'm worried about nothing. I just can't get with that cavalier attitude when the paper for the script gives me a phone number to call immediately if I am having pain in my legs after or during the injection therapy.

I can't seem to get past my gut telling me this is not a good idea. I have severe osteoporosis and the side effects I am reading that people are having, posted here and on other sites give me pause. I can't seem to get a real sense of what the actual patient experiences are from my Dr. I also have an issue with accountability. What happens if and when side effects occur? Who helps or undoes, or fixes those? I have to live with the consequences. I am asking myself if the reduction in quality of life which may or may not resolve and from what I have read above and elsewhere and are experienced on a daily basis are worth a few percentage points. I am wondering what support and active participation the pharma company is taking to support and address the issues/ side effects women are experiencing or is it simply, "well, we listed the risks, sorry", and they get on with their day while we live with these issues.

I am not saying to stick one's head in the sand or be in denial, but I feel like I have to really exhaust all possible solutions that are not medication based. An inclusive diet, exercise, cardio, energetic and mind/action approach. I want my decision to feel like I am doing this with as much awareness as possible because at the end of the day, the only one who will have to live with this is me. And I do not want to act out of fear or feel pressured.

These are all the issues that are circling around in my head given my recent not great dexa scan. I have healthy bone density in my femur, thighs. Spine is problematic. Do I want to trade this and feeling great now for all the irreversible risks? It takes a good two years for bone to remodel and if I am diligent, i mean really diligent, leaving no stone unturned and give myself the best non-med care and protocal, can I make a difference? That is where I am and that is what i am leaning towards vs a stonger spine but feeling horrible on a daily basis with no resolution of issues.

Anyone else have these feelings? Everyone who posted here at the onset of your treatment, I'd be interested to know how you are feeling as you progress. I am hoping to hear that it's all going well. I want to hear that, as this is still a very new drug and I have a lot of sensitivities. I await your truthful and hopefully good and not so good responses, i want to hear it all as I think this will be helpful to all.

Thank you.

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Totally with you there. I'm so worried about it, but I have so many drug reactions. The few osteoporosis drugs I've tried...one dose gave me enough side effect, severe to make me stop. Fosomax - horrible GI pain, Tymlos - severe migraines, Evenity - disabling insomnia...and now tooth sensitivity though not sure it's from that, and I have pretty significant osteoporosis, but trying to do whatever I can without meds for now. Am on estrogen/prog. for menopause, and so far ok on that. My body just doesn't like anything it doesn't recognize. Try to stay active, weight bearing activity, some qigong/meditation, vitamin MK4, collagen protein. Doctors really pressure you and make you feel guilty, in my experience, like its the drugs or you die..it's terrible. It makes me not trust them. They should always present any alternatives. There are many that simply cannot take certain meds.

njhornung | @normahorn | Apr 22, 2023

In reply to @tkdesign "Totally with you there. I'm so worried about it, but I have so many drug reactions...." + (show)

Thank you for stating this. I was referred to an osteoporisis clinic but think that was a mistake. Seeing a focused specialist sounds ideal. However, I am now questioning if I am regarded as a total person and not just bones. I also realize that their entire income comes from treating osteoporosis. I hate to think that way but do. I am still decidung if I will start treatment or not. I will be looking into switching to a more broad based doctor. What specialty should I look into?

galactica | @galactica | Apr 22, 2023

I agree there should be a more open minded consideration of alternatives. It at least not feeling like I am being talked down to or scolded because I am honestly trying to feel into what is the best approach for me. I spoke to a physician friend of mine who also has osteoporosis and is herself weighing her options given her experience of seeing the side effects women have come in with as a result of the bone meds . And even given this, she is not discounting medication as an option for herself.

I have been point blank asking the non medication alternatives approach people - “Have you seen results or significant increases in bone density with women that have my scores and a complicated medical history?” And the answer is yes. However I too am aware this may be only a few cases and does not guarantee it will work for me. Even when I asked my exercise physiologist, they have seen improvements - but over the course of a year, two years and longer with diligent work. Again, I am aware that there is no guarantee, that it is a very diligent commitment with respect to following a regimented exercise, balance and flexibility training, dietary changes, calcium and mineral supplementation with blood tests to follow up with, and of course what in my opinion which I rarely see mentioned, in addition to rest and stress reduction, is the added component of energy healing and visualization which I believe (my own opinion and experience) can only help as an additional tool (not a substitution). But for me, given my sensitivity to medications and some irreversible side effects I have experienced, I am willing to take a year and make the commitment and paying attention to any changes that may cause me to change my mind and go in the meds.

Additionally, I have found on YouTube - free guided and subliminal mediations for osteoporosis and relaxation and healing of all kinds that I think are useful whether one is on medication or pursuing an alternative route.

I hope this is helpful. I value the options you all provide and I am somewhat more relieved to hear that many who post here are not having the side effects or very few. My concern is also long term since Evenity is fairly new and I feel like more time is needed for the after effects. Please let me know if this is completely unfounded because I want to know if my concerns are unfounded.

pedsnurse61 | @pedsnurse61 | Apr 22, 2023

In reply to @galactica "I agree there should be a more open minded consideration of alternatives. It at least not..." + (show)

@galactica

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As I have said in my earlier posts, I took a 6 year break from taking medications. Prior to that I tried 4 of them with unfortunately no improvement. I changed my diet, started meditating, walking everyday, limited my alcohol intake and took ( and still do) many vitamins and supplements. What changed my mind was my mom dying after having osteoporosis and breaking her hip. Maybe due to the stress in my life, my DEXA numbers got much worse( and they had been stable) so I decided to start taking Evenity. I am hopeful that I will get some kind of benefit from taking this medication. I did a lot of researching and soul searching before starting this medication. Finding this site with all the support and education others have given has been very helpful. I have had 3 doses with minimal side effects. Your concerns are valid, I feel you need to make the decision that you will feel comfortable with.