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.

@siberian

Has anyone found a natural cure for ostoporosis

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Define natural?

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@contentandwell

@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

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I have had to use those self injectors before, for something else, although it was on a weekly basis, not a daily basis. I wouldn't say I feared it or that it was very painful but my stomach became a mass of bruises even after just 10 weeks of weekly shots I have also had them done in a clinic and rehab setting for other reasons. My stomach was much less bruised when done that way.

My doctor said in home self injection treatments are not approved by Medicare as quickly and easily as ones done in the clinic. It only took a couple days for them to approve the Evenity. We have delayed starting it because I am going in on Tuesday for surgery to insert a rod in my right femur before it breaks like the left one did.

I agree that not having to go anywhere can be great. The clinic where I will be getting it done is 30 miles away. I try to look at it as a reason to get out of the house. If it weren't for Covid we would go out to eat after the shots.

Thank you for the concern.

Char

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@siberian

Has anyone found a natural cure for ostoporosis

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Hello @siberian and welcome to Mayo Clinic Connect. I wonder if you didn't mean "alternative" treatment, which can sometimes mean the same thing.

In case my guess was right, I have found an article that lists some alternative treatment options you may be interested in reading about.

– Osteoporosis Alternative Treatments:
https://www.healthline.com/health/osteoporosis-alternative-treatments#melatonin
Do you suffer from Osteoporosis? If so, how long?

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Hello. I thought I would give my views on Evenity. I broke my knee a few years ago, it was a clean break and took about 6 weeks to heal. It was just bad luck that day, I fell in a “snow hole”, it was covered with snow and stepped right in it and turned and felt my knee break. I’m small boned and I was diagnosed with Osteoporosis several years ago in right hip, my hip doesn’t give me any problems, but because of my knee, my Dr recommendation was Evenity. The Rep just left when I arrived at the office for a checkup and I was the first one to try it. I trusted my Dr, no blood work was done to check my Calcium or anything. Well, started them in April. The first shots I could bearly move my arm for days, then my legs were always sore. I have had 4 shots and have been in terrible pain since. Going from a sitting position to standing, it so painful and knees causes me so pain. When I walk, it feels like I’m walking on golf balls. My feet feel cold all the time and I’m being poked with needles, my lower back hurts all away around to the groin area and my hips, thighs and calf’s feels like I ran 10 miles. I’m 58 and walk like I’m 80. I told my Dr, that I hurt so bad and I stopped the shots, his reply was let’s wait until October to get it out of your system. 2 weeks ago I was in outpatient because of the pain. I have switch Drs now and have to have test run next Wednesday. I see a chiropractor 3 times a week, my hips keep going out of place. Please, don’t get this shot, it’s not worth it. My Dr has never even prescribe anything else for me to help with Osteoporosis and everything I read says when all other medications have failed, I didn’t get that option. My body is in pain every single day and I’m totally pissed off that my Dr didn’t care and put me on these shots. Evenity is awful and it’s just not worth it. I pray It’ll get better and I will go with changing my diet and exercise and chiropractor care. There you have it. Thanks for reading!

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I too am considering these injections and spoke with my doctor today as my bone density decreased 14% . I tried proles for 2 yrs and my numbers didn't improve. IF my insurance covers this I may try it

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My rheumatologist has recommended Evenity for me. I am considering it. My t-score for the spine is -3.3 and the total hip is -3.0. I am almost 67 years old. My doctor did test calcium and Vit D. I have declined medications is the past. Every 2 years I get a bone density scan and every one is worse. This medication carries a warning for heart attack and stroke. I decided to get an EKG. I waiting to hear back from the cardiologist
.

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Thanks so much for your feedback. I am waiting to see if it is affordable for me provided that I get some additional assistance financially. My question is do you feel ill for the next few days after the injections are administered each month?

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@dgm123s

Thanks so much for your feedback. I am waiting to see if it is affordable for me provided that I get some additional assistance financially. My question is do you feel ill for the next few days after the injections are administered each month?

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Hi dgm123,

I have not started the drug yet. Some people have told me that they get side-effects and some people have told me that they do not.

Tina R

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@debj

Hello. I thought I would give my views on Evenity. I broke my knee a few years ago, it was a clean break and took about 6 weeks to heal. It was just bad luck that day, I fell in a “snow hole”, it was covered with snow and stepped right in it and turned and felt my knee break. I’m small boned and I was diagnosed with Osteoporosis several years ago in right hip, my hip doesn’t give me any problems, but because of my knee, my Dr recommendation was Evenity. The Rep just left when I arrived at the office for a checkup and I was the first one to try it. I trusted my Dr, no blood work was done to check my Calcium or anything. Well, started them in April. The first shots I could bearly move my arm for days, then my legs were always sore. I have had 4 shots and have been in terrible pain since. Going from a sitting position to standing, it so painful and knees causes me so pain. When I walk, it feels like I’m walking on golf balls. My feet feel cold all the time and I’m being poked with needles, my lower back hurts all away around to the groin area and my hips, thighs and calf’s feels like I ran 10 miles. I’m 58 and walk like I’m 80. I told my Dr, that I hurt so bad and I stopped the shots, his reply was let’s wait until October to get it out of your system. 2 weeks ago I was in outpatient because of the pain. I have switch Drs now and have to have test run next Wednesday. I see a chiropractor 3 times a week, my hips keep going out of place. Please, don’t get this shot, it’s not worth it. My Dr has never even prescribe anything else for me to help with Osteoporosis and everything I read says when all other medications have failed, I didn’t get that option. My body is in pain every single day and I’m totally pissed off that my Dr didn’t care and put me on these shots. Evenity is awful and it’s just not worth it. I pray It’ll get better and I will go with changing my diet and exercise and chiropractor care. There you have it. Thanks for reading!

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I am surprised no one has replied to your post. I too have experienced chronic joint pain since I started 2 months ago. Ironically, I received my 3rd session of 12 today. I worked around the house for about an hour this afternoon and I can hardly move without stiffness and pain. Unfortunately, I received my last dose of Covid -19 around the time I started Evinity, so I really don’t know which is the culprit, but I know it’s from one or the other. I am 51 and my dr stated my density numbers were so low, he knew my insurance would cover. So, I had to decide what was important to me. I was very encouraged knowing my bones will actually gain instead of just halt. But, I am having growing concern as time goes on. About 2 weeks after my 1st shot (early September) I worked around my house for several days lifting, pushing etc… my body has not recovered since. It started with lower back pain and slowly started going down the side of my right thigh. I can not stand longer than 3-5 minutes without excruciating pain and burning!!! Ibuprofen and lots of it will help but I know that regimen is detrimental also. I’ve been told by many it sounds like my IT band, not sciatica. I will follow up with my dr in January and I will see what he says if I can endure that long. I will try to remember to update thread then. I would love to hear from anyone else who may be experiencing same symptoms.

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@knpbads69

I am surprised no one has replied to your post. I too have experienced chronic joint pain since I started 2 months ago. Ironically, I received my 3rd session of 12 today. I worked around the house for about an hour this afternoon and I can hardly move without stiffness and pain. Unfortunately, I received my last dose of Covid -19 around the time I started Evinity, so I really don’t know which is the culprit, but I know it’s from one or the other. I am 51 and my dr stated my density numbers were so low, he knew my insurance would cover. So, I had to decide what was important to me. I was very encouraged knowing my bones will actually gain instead of just halt. But, I am having growing concern as time goes on. About 2 weeks after my 1st shot (early September) I worked around my house for several days lifting, pushing etc… my body has not recovered since. It started with lower back pain and slowly started going down the side of my right thigh. I can not stand longer than 3-5 minutes without excruciating pain and burning!!! Ibuprofen and lots of it will help but I know that regimen is detrimental also. I’ve been told by many it sounds like my IT band, not sciatica. I will follow up with my dr in January and I will see what he says if I can endure that long. I will try to remember to update thread then. I would love to hear from anyone else who may be experiencing same symptoms.

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I have found capsaici patches helpful and tylenol or advil/aleve or whatever. I also sometimes overdo or make a mistake and it is a week or two or three of pain. As for pain from a bone growing med, I expect that and try to welcome it even if I have trouble getting going that day. Right now I am in pain and about to try to go to the store. (I do curbside pickup so I don't have to lift into the car.)

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@windyshores

I have found capsaici patches helpful and tylenol or advil/aleve or whatever. I also sometimes overdo or make a mistake and it is a week or two or three of pain. As for pain from a bone growing med, I expect that and try to welcome it even if I have trouble getting going that day. Right now I am in pain and about to try to go to the store. (I do curbside pickup so I don't have to lift into the car.)

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capsaicin

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I’m thinking of going on Evenity after experiencing 3 fractures of my spine. I have been on both fosamax and Prolia. Has anyone had a scan after being on Evenity for a year? What were the results?

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