My Experience on Evenity

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.

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
@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
In reply to @expresso409 "Research AlgaeCal." + (show)
@expresso409

Research AlgaeCal.

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

tnx

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@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

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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.

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@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!

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

REPLY
@becsbuddy

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

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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!!

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@artscaping

@arlene7. Thank you so much for sharing your experience with Evenity. I noted the statement about "everything" has side effects. I think that is true and the challenge becomes to make sure Evenity or other bone medications don't have an interaction with our current drugs or treatments. I also have an allergy to sulfa drugs…..so you did have and now it is possible that you will not have an allergic reaction to sulfa. No more rolling on the carpet naked to take care of the itching. Now that I have the neuropathic itch, I don't need anything else.

Arlene, there is one question about Evenity, I think many of us would like to hear. How long do you take Evenity? 2 years? And then what? I always want to know what comes next to protect the bone that is developed.

You have my good wishes for a helpful outcome. Please check in with us as you begin this journey. You have persevered beautifully. Now all you have to do is share …….. not a bad deal.

Be safe and protected from inner and outer harm.
Chris

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Can you clarify is there is Sulfa in Evenity? Thanks!

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@sus34

Can you clarify is there is Sulfa in Evenity? Thanks!

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Here is what the manufacturer says:What are the ingredients in EVENITY? Active ingredient: romosozumab-aqqg Inactive ingredients: acetate, calcium, polysorbate 20, sodium hydroxide, sucrose and water for injection.
Does this answer your question?

REPLY
@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

Jump to this post

Evenity is also anti-resorptive (in addition to buildng bone) and like biphosphanates, carries a risk of atypical femur fractures and dentla/jaw issues. So I would think you might consider Forteo or Tymlos, which are not anti-resorpitve.

REPLY
@windyshores

Evenity is also anti-resorptive (in addition to buildng bone) and like biphosphanates, carries a risk of atypical femur fractures and dentla/jaw issues. So I would think you might consider Forteo or Tymlos, which are not anti-resorpitve.

Jump to this post

I will discuss this with my doctor. They have put off starting me on it because of my surgery this Tuesday.

Thanks.

REPLY
@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

Jump to this post

@charleneb I am not on Evenity, I am on Tymlos but I just wanted to make a comment here.

The daily injections take about two minutes, part of that is deciding using the diagram, where each shot should best be, and preparing the needle. The whole thing is quick and most often painless. Once in a while, I get a little twinge of discomfort but nothing that I would consider pain. I like that I just do it before I go to bed and I don't have to make appointments and go elsewhere.

I am on Medicare and getting it approved was not a problem. I had a minor hip fracture so I think that clinches it (a minimally displaced trochanteric femur fracture). I just don't want you to be afraid of the daily injections. The only negative for me is the cost. If you are on Medicare it will most likely cost about $560 a month initially but with such a large copay you do get into the "donut hole" quickly and the cost is greatly reduced. If you are not on Medicare then there are often programs where people pay nothing for it! The only way that happens if you are a Medicare recipient is if your income is less than $60,000 a year.
JK

REPLY

Has anyone found a natural cure for ostoporosis

REPLY
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