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.

@californiakaren

Hello everyone - I appreciated reading everyone's posts when I first decided to start Evenity this summer for the information and emotional support. I would like to give back with a post myself!

I am 58 years old with T-scores this summer of -1.8 in each hip (femoral neck) and -3.0 in my spine. My low bone density may be due to taking prednisone for 6 months when I was 30 as part of a chemo regimen for Hodgkin's disease. Luckily, my doctor thought to check my bone density with a Dexa scan this year to check for problems rather than waiting until I had a fracture.

I was able to get Evenity approved by Anthem Blue Cross. I mentioned to my endocrinologist that I've had some root canals previously and could need another in the next year. She noted that on her submission for approval to my insurance. Evenity has less of a risk of jaw necrosis caused by dental work than other drugs because it does not shut down bone growth. However, I am hoping that I won't need a root canal.

I recently started a weekly yoga class to improve bone density. I recommend looking at Dr. Fishman's Youtube video and reading about his research at https://sciatica.org. I also walk a mile 5 days a week, lift weights at a gym once a week and try to do a little yoga on my own at home. I also do heel bounces while the coffee brews that I learned about in the Facebook group called The Strong Bones Challenge. All of this is time consuming since I also work, but I know it is worth it! This exercise has also been good for my balance and sense of well-being.

I've had 3 Evenity injections so far. They were all done in my stomach and weren't too painful. I wear low-waisted pants for a few days afterward so that no waistband rubs the injection site. My stomach looks very slightly swollen afterward but not too bad. I wish all of you the best on your journey toward stronger bones!

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Hello @californiakaren! Thank you so much for sharing. It's much appreciated. Thanks also for sharing your exercise routine and about Dr. Fishman's 12 poses for osteoporosis.
I'm 60 and my T-scores are really unchanged from 2018. Currently:
PA LUMBAR SPINE(L1 - L4): -3.4
LEFT TOTAL HIP: -2.5
LEFT FEMORAL NECK: -2.6
LEFT 1/3 DISTAL RADIUS: -4.9

In 2018 my PCP prescribed one Reclast infusion and after she retired, my new PCP preferred to have Rheumatology manage treatment. I haven't asked but I'm guessing that the low bone density is related to a small body frame and a diagnosis of rheumatoid arthritis over 35 years ago (when I was 26). I have never broken a bone and feel that my bones are quite strong, despite the T-scores. I do think there are other, better measures of bone density that are not yet standard for osteoporosis diagnosis. And from reading previous comments, it seems that bones can break with better scores than mine.

I was initially in agreement about treatment with Evenity, until my insurer (GEHA (Government Employee Health Association), which is administered by Aetna), declined it and tried to push Tymlos (which was my doctor's second choice). Apparently, Evenity is not on their formulary, though the costs are similar. I wasn't happy with my health insurer trying to be my doctor.

Then I began reading and researching about the pros and cons of these meds and the bisphosphonates (and HRT) and, the possibility that I could run out of options before I'm 70 (after dealing with whatever side effects arise during treatment) was not ideal. As my doc said, "We can treat with anabolic meds for 1-2 years, then use bisphosphonates for a few years afterwards to maintain the improvements, and then we'll wait and see." Hmmm!

I really appreciate having this site to mull over others' experiences before making a decision about following this course of treatment and when to begin. Thanks again for sharing. I hope you will continue to post updates as you progress through treatment.

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@sheilad1

I would get another opinion. Keith McCormick is a chiropractor who developed osteoporosis at 45 and was better informed than any of the four other docs I spoke to. He doesn’t take insurance but you would not need to talk to him too often.

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Wow! How neat to see Dr. McCormick's name here. I flew from Texas to Massachusetts to have a consultation with him in August. I am following all his recommendations and reading his book a 2nd time. It is The Whole Body Approach to Osteoporosis. The first thing he said to me was I had no choice but to go on medication, because of a T-score of -5.1. I was persuaded and pick up a prescription for Tymlos tomorrow. I was diagnosed in 2000 and chose not to go on medication. There is so much I did not know as I made changes to my lifestyle, diet and supplements over the years. I am well-informed now, but it's a bit late, so I'll try to medication.

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@kathleenintexas

Wow! How neat to see Dr. McCormick's name here. I flew from Texas to Massachusetts to have a consultation with him in August. I am following all his recommendations and reading his book a 2nd time. It is The Whole Body Approach to Osteoporosis. The first thing he said to me was I had no choice but to go on medication, because of a T-score of -5.1. I was persuaded and pick up a prescription for Tymlos tomorrow. I was diagnosed in 2000 and chose not to go on medication. There is so much I did not know as I made changes to my lifestyle, diet and supplements over the years. I am well-informed now, but it's a bit late, so I'll try to medication.

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Good luck.

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@barbiea

Thanks and I agree about the assessment of the whole body. This is crazy I'm a very active person and all of a sudden this year --boom (I turned 60, but I don't think of myself as- older..lol) but I guess this is my wake up call, just wish it wasn't so urgent. I was pretty good for 10 years after my cancer treatment, I was more worried about the return of cancer, than bone loss. But I fought that and I'll fight this. I rec'd the call today, I go for my first Evenity shot on Jan. 5th. Funny (or not) thing is the shot will be given to me where I rec'd my cancer treatment..

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Hello, Barbiea,
When I went for my injections, I didn't realize these centers also performed chemotherapy infusions. If it's difficult for you to return to the same site, you can talk to your doctor to see if there is,another site where you can receive the injections. You have to sit for 15 minutes to make sure there are no serious allergic reactions. After that they gave the shots and I could leave right away.
You are a real warrior!

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@karmakay22

Oh no way! I am a Pansy with side effects! If these symptoms persist after the third shot, I will STOP!!! Sadly, Evenity is my last hope! I agree about the spacey feeling with
the fatigue! Hard to explain, it is seriously a different level, kind of like mono.

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The side effect is the same I felt doing Chemotherapy for a year. Ugh not looking forward to that feeling. We'll see. I afraid about the jaw pain, cause I do have some issues there, but have been seeing a Dentist for issues, just need to stay on top of it. Thanks.

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I have been taking Forteo( no side effects) for 1 year 1 month I was healthy before my T-12 fractured . I was in the jim before 5 days a week yoga 3 days weight training 3 days biking 3 days now I am in a lot of pain for 2 years from the fracture and arthritis and the degenerative spine and just tried perm mat and lazer mat it has helped with the pain I was told it helps osteoporosis is this TRUE ? can we ever overcome Osteoporosis?

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I am in the process of trying to decide whether or not to go on medication and have an appt with an endocrinologist at the end of January. These comments from you all are very helpful indeed. Thank you all.

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@kirstenlheld

I am in the process of trying to decide whether or not to go on medication and have an appt with an endocrinologist at the end of January. These comments from you all are very helpful indeed. Thank you all.

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I spent months researching the various drugs. Especially, helpful we’re the video presentations found online by university experts. I settled on Evenity with my first shot last Friday. I was a little sore at the injection sites, on the back of my arms. I feel good and was surprised to have less pain in my lower back by Saturday morning. I was approved the drug by Medicare in less than a week. My T-score in my lower back is -3.4.

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@dmanduca

I spent months researching the various drugs. Especially, helpful we’re the video presentations found online by university experts. I settled on Evenity with my first shot last Friday. I was a little sore at the injection sites, on the back of my arms. I feel good and was surprised to have less pain in my lower back by Saturday morning. I was approved the drug by Medicare in less than a week. My T-score in my lower back is -3.4.

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Good to know. My T score of my lumbar spine is -2.8 and a little less than that in my left hip/femoral neck still in the osteopenia range. I watched the recent hip conference that was show via GBMC. It was fantastic. I am hoping that when I see the doctor associated with the one featured in the webinar (I think her name as Ruth Horowitz) we will come out with a good plan.

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@kirstenlheld

Good to know. My T score of my lumbar spine is -2.8 and a little less than that in my left hip/femoral neck still in the osteopenia range. I watched the recent hip conference that was show via GBMC. It was fantastic. I am hoping that when I see the doctor associated with the one featured in the webinar (I think her name as Ruth Horowitz) we will come out with a good plan.

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I highly recommend the YouTube videos with Dr. Janet Rubin and Margaret Marin P.T. I was going to choose no medications. I changed my mind after listening to these women. They have decades of experience treating women with osteoporosis.

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