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.

@sonomagal22

Forgot where I saw them because I have look on so many sites. I did notice
this week that Evenity changed its advertising saying 70 per cent see a positive gain in their spine
OP, I did see some gain there, but in the same article 60 per cent had no gain in the hips. (Of course they don’t advertise that.) I just don’t want others to expect as I did that this is the answer for hip OP new bone building. I expected that Evenity would help all bones equally, and it doesn’t . Doctors need to know this, but who is going to tell them? Certainly not the drug manufacturers.

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Doctors know the difference between trabecular and cortical bone (see below). My doc told me progress was going to be better with spine than hips, with Tymlos in my case.
https://karger.com/ajn/article/47/6/373/32936/Cortical-or-Trabecular-Bone-What-s-the-Difference
excerpt:
The vertebral body is the classical trabecular bone site, and vertebral compression fractures are the hallmark of osteoporosis. However, the thin cortical shell plays a substantial role.
The hip is considered a cortical bone site, but both cortical and trabecular bone contribute to femoral strength, the contribution of the cortical bone being higher in femurs with lower trabecular bone density [2]. Furthermore, the cortical bone supports bending in the distal region of the femoral neck and the trabecular bone supports the proximal load.

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@pulane

This is all helpful for me to read. I am 68 with severe osteoporosis. Fosamax did not work for me and now after 1 year of Tymlos, my DEXA score has still gone down. Both of my former doctors have retired and I am assigned to see a PA next month, I really am not happy about that as I feel I need someone who researchers osteoporosis carefully. I have scoliosis too and had back surgery when 17 that has led to severe arthritis in the spine (my ribs were fused to certain vertebrate in a procedure no longer done) so my bones are quite something else! I eat what I think is a good diet , do strength training and balance exercises but that only goes so far. Live in Madison, WI and am going to see if my GP can refer me to someone at Mayo as I am (hoping) there could be good help there. IN reading all of the above, I am thinking I could try evenity? thank you and best to all of you great people.

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Hi @pulane,
As with all of us, we're individuals with a unique set of factors affecting our bone health. It can be difficult to find a doctor who will see you as a whole person rather than a bunch of different independent medical issues. I haven't had any luck finding the right doctor and treatment yet. My doctors are doing what they think is best, but they, like most, are used to just writing a prescription to treat the symptom rather than doing the research to treat the cause. On a side note, they are both approaching retirement, so even if they were doing all that I hoped they would, I would soon be in a similar situation to yours though in a much smaller community with fewer options nearby.
I'm disheartened to hear that you feel you need to go to the Mayo Clinic when you live in Madison with UW Health available to you. Among the health systems available to me through my insurance, though it's a bit of a drive for me, UW Health seems my best option. Because you feel you have to go elsewhere makes me curious about your experiences in Madison. Were your doctors who retired part of the UW system? Do you feel that they were willing to do the research into your unique situation when they so inconveniently retired? If anyone else here has consulted specialists at UW Health for osteoporosis treatment, what was your experience?
@pulane I hope that you have found a doctor you feel is the right fit for your needs. If you've already posted an update on your situation, please let me know where I can find it in the forum. I'd love to know how you're getting along.

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@susanfalcon52

Teb,
I am interested in your GERD diet and herbs. I’m on Protonix for GERD and as I’m sure everyone knows, Protonix is bad for bones.

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Susan,
I hope you don't mind if I jump in on this conversation. I recently developed "medication-induced GERD" from taking oral alendronate. The best approach I've found for treating it is following an anti-inflammatory diet. For three weeks, I stopped eating processed foods, red meat, drinking wine, etc. I increased anti-inflammatory foods like fatty fish and blueberries, and, in that time, I hardly felt any discomfort at all from the GERD. I continue on an "anti-inflammatory light" diet, and I've started eating oatmeal, which absorbs acid in the stomach, and fruits like bananas and cantaloupe, which are alkaline. I find it is especially useful to eat 1/2 of a banana an hour or so before going to bed. I am averse to taking any of the medications recommended for GERD, so I'm happy to have found a system of eating that makes a real difference for me. I have to admit that it was easier to give up my red wine than my coffee (!) I still have 1 - 1 1/2 cups of coffee every morning followed by fennel tea (which is good for the digestive system).

I hope this is useful for you.

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I begin Evenity next Wednesday, Nov. 29th, after much research and angst. Your comments are helpful and encouraging. Especially with regard to complementing the injections with proper diet and exercise! Let's hope for good results on our parallel paths.

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Good luck! Why does a 150lb person receive the same dose as a250 lb person?
Do they just come up with an average when they determine dosage?

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@stumbles

Good luck! Why does a 150lb person receive the same dose as a250 lb person?
Do they just come up with an average when they determine dosage?

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That us a question some of us 100 lb people are asking. Are we being way over medicated! Is there any correlation of adverse reactions and weight?

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@lashu

I begin Evenity next Wednesday, Nov. 29th, after much research and angst. Your comments are helpful and encouraging. Especially with regard to complementing the injections with proper diet and exercise! Let's hope for good results on our parallel paths.

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Good evening @lashu, You will find that your research had great value. Angst....I don't know.....maybe you won't have any. You are a wonderful member to the Connect Support Group. I wish you well and also hope that you will share your experience with the group.

May you be safe, protected and free from inner and outer harm.
Chris

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Thanks so much Arlene for this valuable information
I just noticed this post is from 2020
Hopefully you’re still following this site
Wondering how you’re doing now ?

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@artscaping

Good evening @lashu, You will find that your research had great value. Angst....I don't know.....maybe you won't have any. You are a wonderful member to the Connect Support Group. I wish you well and also hope that you will share your experience with the group.

May you be safe, protected and free from inner and outer harm.
Chris

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Chris, thank you so much for your kind encouragement throughout my research on this most informative and compassionate site. I most certainly will continue to seek out the experiences of others and to share my own. My Evenity injections are monthly, starting late November. Angst is something I consider normal and within limits to have a positive function: it makes me more cautious about lifestyle routines. This has often been a true safeguard.

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@wilkenl

Susan,
I hope you don't mind if I jump in on this conversation. I recently developed "medication-induced GERD" from taking oral alendronate. The best approach I've found for treating it is following an anti-inflammatory diet. For three weeks, I stopped eating processed foods, red meat, drinking wine, etc. I increased anti-inflammatory foods like fatty fish and blueberries, and, in that time, I hardly felt any discomfort at all from the GERD. I continue on an "anti-inflammatory light" diet, and I've started eating oatmeal, which absorbs acid in the stomach, and fruits like bananas and cantaloupe, which are alkaline. I find it is especially useful to eat 1/2 of a banana an hour or so before going to bed. I am averse to taking any of the medications recommended for GERD, so I'm happy to have found a system of eating that makes a real difference for me. I have to admit that it was easier to give up my red wine than my coffee (!) I still have 1 - 1 1/2 cups of coffee every morning followed by fennel tea (which is good for the digestive system).

I hope this is useful for you.

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Thank you !Very Helpful. If you have any sites for this diet please share.,,

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