1. < Osteoporosis & Bone Health

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.

judith73 | @judith73 | Jul 28, 2021
In reply to @marcd "I began taking Evenity last month. This is my first treatment for osteoporosis. I discussed with..." + (show)
@marcd

I began taking Evenity last month. This is my first treatment for osteoporosis. I discussed with cardiologist who recommended that I take Evenity if that is the best solution for osteoporosis. I looked over reports on adverse reactions and noticed that there was not much difference in rate of adverse reactions when comparing Evenity group to placebo group. Personally, so far, I have had no adverse reactions. Mild swelling at injection site, but not enough to stop me from swimming the next morning.

Jump to this post

I also began taking Evenity in June. The initial injections were in the bicep muscles, and I didn't have the soreness and swelling that I had after the July injections ( they were administered in the back of my arms). I had large red marks on my arms as well as swelling and soreness. The soreness lasted more than 5 days and the red areas took longer to disappear. I also felt very tired the following week.
I am determined to continue this drug and wonder if anyone else has experienced the same. My next injection is Aug. 8. Thank you for your information!

REPLY
4 replies
bunky44 | @bunky44 | Jul 28, 2021
In reply to @judith73 "I also began taking Evenity in June. The initial injections were in the bicep muscles, and..." + (show)
@judith73

I also began taking Evenity in June. The initial injections were in the bicep muscles, and I didn't have the soreness and swelling that I had after the July injections ( they were administered in the back of my arms). I had large red marks on my arms as well as swelling and soreness. The soreness lasted more than 5 days and the red areas took longer to disappear. I also felt very tired the following week.
I am determined to continue this drug and wonder if anyone else has experienced the same. My next injection is Aug. 8. Thank you for your information!

Jump to this post

Judith~ we all wish you the very best in your commitment....please keep posting as to how you are feeling while taking this drug..the good and bad reactions as well as your feelings are so important to those that are opposed to taking 'drugs' for this condition...or to have others respond as well on their road...All info is important!
Feel well....hugs....

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 29, 2021
In reply to @judith73 "I also began taking Evenity in June. The initial injections were in the bicep muscles, and..." + (show)
@judith73

I also began taking Evenity in June. The initial injections were in the bicep muscles, and I didn't have the soreness and swelling that I had after the July injections ( they were administered in the back of my arms). I had large red marks on my arms as well as swelling and soreness. The soreness lasted more than 5 days and the red areas took longer to disappear. I also felt very tired the following week.
I am determined to continue this drug and wonder if anyone else has experienced the same. My next injection is Aug. 8. Thank you for your information!

Jump to this post

Good luck on August 8. Thank you so much for sharing your early experiences. It gives others a chance to gain knowledge.

Chris

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 29, 2021
In reply to @judith73 "I also began taking Evenity in June. The initial injections were in the bicep muscles, and..." + (show)
@judith73

I also began taking Evenity in June. The initial injections were in the bicep muscles, and I didn't have the soreness and swelling that I had after the July injections ( they were administered in the back of my arms). I had large red marks on my arms as well as swelling and soreness. The soreness lasted more than 5 days and the red areas took longer to disappear. I also felt very tired the following week.
I am determined to continue this drug and wonder if anyone else has experienced the same. My next injection is Aug. 8. Thank you for your information!

Jump to this post

Thank you, Judith. I’m collecting all this information for when i see my endocrinologist in August. Anything is better than having a broken hip! Be sure to share how the August injections go.

REPLY
charleneb | @charleneb | Aug 17, 2021

My first post:

I was diagnosed with Osteoporosis about 19 years ago, when I was 51 years old. I have been on one or another of the various bisphosphonates treatments most of that time. After each dexascan I was told that it was doing it's job and the deterioration was holding steady. I was off the medication a few times for dental surgery and because I just got tired of taking it . Turns out that taking a vacation from it is now recommended.

BUT, late last year I developed pains in both thighs, that seemed worse in the days following taking Fosamax. So, I stopped taking it again, without discussing with my doctor or even telling her about the pain. Some days my thighs felt like jello but I did not have any falls.

Then, while away from home in early March, I was hit by a dog. Really! I had just opened a sliding glass door to let the dog in and while still holding the handle he pushed his way in, bounced into my left thigh and kept going. I heard the crack of my femur breaking while I was still standing holding that handle. I eased myself to the floor, not falling, and thus began my next journey.

I had a rod put into my femur and spent just over two weeks in a rehab facility. We did not go home for almost 4 months (another long story involved). I did not go back on the Fosamax. The surgeon said my right femur needed a rod put in before it broke but I was not ready to go through that again. After coming home I started making all the doctors appointments I had avoided for over a year, including seeing my primary care physician and the orthopedic surgeon who had operated on my foot a few years ago after I rolled my ankle and broke two bones.

Surgeon said that the one who had operated on me was right. I need a rod in my unbroken femur and the sooner the better. Not elective surgery. They consider it urgent. There are small stress fractures that are trying to heal themselves but can't without help. It has not been scheduled yet but hopefully will be in the next 2 weeks.

I had my dexa-scan today and saw an endocrinologist. She was able to see the scan less than an hour after it was taken. She agreed I should NOT take a bisphosphonate again and was surprised I was on it for long. She highly recommended Evenity, to start as soon as Medicare approves it.

According to her and from what I have since read, it is NOT recommended for everyone who has osteoporosis. It is only approved for those who have suffered serious injury because of the osteoporosis and are likely to have another break. Femur breaks are a known complication of long term bisphosphonates use, so there is no point in staying on it. I don't have a history of a heart condition or stroke but I know those are some of the possible complications.

I read the posts here and was interested in the different ways it is being injected just under the skin. My doc said it would be in the tummy. I have had that type of injection before and had the bruises and swelling to show for it that took months to go away. Sounds like I should ask her about the various ways and if she recommends one over another.

She did say that the other medications that require an injection are for daily use at home. Those are less likely to receive Medicare approval than Evenity with it's two injections done at the same clinic visit, once a month for 12 months. Once a month beats out daily as far as I am concerned.

I am interested in seeing how others are doing that are on Evenity and in sharing my story once my treatments begin.

Charlene

REPLY
3 replies
expresso409 | @expresso409 | Aug 18, 2021
In reply to @charleneb "My first post: I was diagnosed with Osteoporosis about 19 years ago, when I was 51..." + (show)
@charleneb

My first post:

I was diagnosed with Osteoporosis about 19 years ago, when I was 51 years old. I have been on one or another of the various bisphosphonates treatments most of that time. After each dexascan I was told that it was doing it's job and the deterioration was holding steady. I was off the medication a few times for dental surgery and because I just got tired of taking it . Turns out that taking a vacation from it is now recommended.

BUT, late last year I developed pains in both thighs, that seemed worse in the days following taking Fosamax. So, I stopped taking it again, without discussing with my doctor or even telling her about the pain. Some days my thighs felt like jello but I did not have any falls.

Then, while away from home in early March, I was hit by a dog. Really! I had just opened a sliding glass door to let the dog in and while still holding the handle he pushed his way in, bounced into my left thigh and kept going. I heard the crack of my femur breaking while I was still standing holding that handle. I eased myself to the floor, not falling, and thus began my next journey.

I had a rod put into my femur and spent just over two weeks in a rehab facility. We did not go home for almost 4 months (another long story involved). I did not go back on the Fosamax. The surgeon said my right femur needed a rod put in before it broke but I was not ready to go through that again. After coming home I started making all the doctors appointments I had avoided for over a year, including seeing my primary care physician and the orthopedic surgeon who had operated on my foot a few years ago after I rolled my ankle and broke two bones.

Surgeon said that the one who had operated on me was right. I need a rod in my unbroken femur and the sooner the better. Not elective surgery. They consider it urgent. There are small stress fractures that are trying to heal themselves but can't without help. It has not been scheduled yet but hopefully will be in the next 2 weeks.

I had my dexa-scan today and saw an endocrinologist. She was able to see the scan less than an hour after it was taken. She agreed I should NOT take a bisphosphonate again and was surprised I was on it for long. She highly recommended Evenity, to start as soon as Medicare approves it.

According to her and from what I have since read, it is NOT recommended for everyone who has osteoporosis. It is only approved for those who have suffered serious injury because of the osteoporosis and are likely to have another break. Femur breaks are a known complication of long term bisphosphonates use, so there is no point in staying on it. I don't have a history of a heart condition or stroke but I know those are some of the possible complications.

I read the posts here and was interested in the different ways it is being injected just under the skin. My doc said it would be in the tummy. I have had that type of injection before and had the bruises and swelling to show for it that took months to go away. Sounds like I should ask her about the various ways and if she recommends one over another.

She did say that the other medications that require an injection are for daily use at home. Those are less likely to receive Medicare approval than Evenity with it's two injections done at the same clinic visit, once a month for 12 months. Once a month beats out daily as far as I am concerned.

I am interested in seeing how others are doing that are on Evenity and in sharing my story once my treatments begin.

Charlene

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Research AlgaeCal.

REPLY
1 reply
charleneb | @charleneb | Aug 18, 2021
In reply to @expresso409 "Research AlgaeCal." + (show)
@expresso409

Research AlgaeCal.

Jump to this post

I will check with my doc to see if she recommends a specific calcium brand. She didn't when I last saw her.

tnx

REPLY
1 reply
expresso409 | @expresso409 | Aug 18, 2021
In reply to @charleneb "I will check with my doc to see if she recommends a specific calcium brand. She..." + (show)
@charleneb

I will check with my doc to see if she recommends a specific calcium brand. She didn't when I last saw her.

tnx

Jump to this post

It is far more than another calcium brand. Also check the reviews. I won't know how much good it has done yet, until my Dexa scan in October, but from reviews, I'm confident I will see some improvement.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 18, 2021
In reply to @judith73 "I also began taking Evenity in June. The initial injections were in the bicep muscles, and..." + (show)
@judith73

I also began taking Evenity in June. The initial injections were in the bicep muscles, and I didn't have the soreness and swelling that I had after the July injections ( they were administered in the back of my arms). I had large red marks on my arms as well as swelling and soreness. The soreness lasted more than 5 days and the red areas took longer to disappear. I also felt very tired the following week.
I am determined to continue this drug and wonder if anyone else has experienced the same. My next injection is Aug. 8. Thank you for your information!

Jump to this post

@judith73 I’m anxious to hear about your latest Evenity injection. How did it go?

REPLY
1 reply
judith73 | @judith73 | Aug 20, 2021
In reply to @becsbuddy "@judith73 I’m anxious to hear about your latest Evenity injection. How did it go?" + (show)
@becsbuddy

@judith73 I’m anxious to hear about your latest Evenity injection. How did it go?

Jump to this post

My third injection was not as reactive as my first. The glands in my arms were not as swollen and red and for this I am thankful! I do continue to notice that the week after my injection finds me with decreased energy level. I am not a sedentary person so this is something I would notice. Now onward to #4!!

REPLY
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