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.

@sheriv

Thank you for sharing. I am going to try one more Reclast infusion then start the Evenity. My doctor can tell how scared I am about this drug. I would love if you keep in touch and let me know the results. I hope your bone density increases :O) I truly would like to know after the 12 shots if it actually works. Please keep in touch. Thank you again for your experience. It helps me more than you know! Take care, Sheri

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I"ve posted on other threads about my scores after Evenity. Scores are below, before and after 11 months. Other than injection site tenderness for a couple of days I was good until about month 6-7? I had aches that started and by 10-11th months I could not move in the morning at all to even do something as simple as picking something off the floor. All joints hurt and my muscles felt oddly brittle. I did not do month 12 but went on Fosomax. Will have another DEXA next month, 7 months post scan after stopping Evenity. The aches have subsided. I think it was worth it but it's still a fairly new drug so just listen to your body as you know it the best!
-3.8 to -2.1 Spine
-2.8 to -2.7 Hip
-2.5 t0 -2.1 Pelvis

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@lauratys

I"ve posted on other threads about my scores after Evenity. Scores are below, before and after 11 months. Other than injection site tenderness for a couple of days I was good until about month 6-7? I had aches that started and by 10-11th months I could not move in the morning at all to even do something as simple as picking something off the floor. All joints hurt and my muscles felt oddly brittle. I did not do month 12 but went on Fosomax. Will have another DEXA next month, 7 months post scan after stopping Evenity. The aches have subsided. I think it was worth it but it's still a fairly new drug so just listen to your body as you know it the best!
-3.8 to -2.1 Spine
-2.8 to -2.7 Hip
-2.5 t0 -2.1 Pelvis

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Your spine improvement is amazing!

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@windyshores

Your spine improvement is amazing!

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Yes and I am thankful for that improvement! It was a stressful time after last shots as I wasn't sure the muscle and joint pain would ever go away but it has pretty much resolved totally since February. It took about 6 months to do so. I don't regret doing the Evenity at this point. I am so anti-meds but we do need some at times!

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@lauratys

I"ve posted on other threads about my scores after Evenity. Scores are below, before and after 11 months. Other than injection site tenderness for a couple of days I was good until about month 6-7? I had aches that started and by 10-11th months I could not move in the morning at all to even do something as simple as picking something off the floor. All joints hurt and my muscles felt oddly brittle. I did not do month 12 but went on Fosomax. Will have another DEXA next month, 7 months post scan after stopping Evenity. The aches have subsided. I think it was worth it but it's still a fairly new drug so just listen to your body as you know it the best!
-3.8 to -2.1 Spine
-2.8 to -2.7 Hip
-2.5 t0 -2.1 Pelvis

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Did anyone explain why your body began to react negatively? Apparently Evenity stops a bone deterioration process, it doesn't have the bone adding process.
But your scores are improved, that is encouraging. Wishing you all good health. Thank you for sharing.

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@susanfalcon52

Pulane - I have my fourth Evenity injections this week. So far, the only side effects have been that I am very fatigued the next day.
I got Keith McCormick’s book “Great Bones” which tells you everything there is to know about drug treatments.
He has a YouTube video discussing drug treatments. You could watch that and see what you think.

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I am going to the dentist this afternoon for a pre-Evenity treatment check up. What did you do in preparation? Did you see your dentist? If so, what was the result of that meeting?

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@lashu

Did anyone explain why your body began to react negatively? Apparently Evenity stops a bone deterioration process, it doesn't have the bone adding process.
But your scores are improved, that is encouraging. Wishing you all good health. Thank you for sharing.

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I don't think the dr really believed me that it was related to Evenity but I have NEVER had aches or pains prior to having Evenity and it did get better over the course of several months once I stopped. I was fine the first few months with only injection site tenderness for a couple of days. I have read other posts here that people had joint pain, muscle stiffness so I don't think I am crazy, ha! Arthralgia is listed as a reaction so I'm not sure why they didn't think it was connected to Evenity. Maybe I am the only patient that has experienced it in this practice?

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I have posted this before. It was provided by my hematologist's office then I asked if Evenity would be okay for me.

Adverse Reactions

>10%:
Neuromuscular & skeletal: Arthralgia (8% to 13%)

1% to 10%:
Cardiovascular: Cardiac disorder (2%), peripheral edema (2%)
Central nervous system: Headache (5% to 7%), insomnia (2%), paresthesia (1%)
Dermatologic: Skin rash (1%)
Hypersensitivity: Hypersensitivity reaction (7%)
Local: Injection site reaction (5%), pain at injection site (2%), erythema at injection site (1%)
Neuromuscular & skeletal: Muscle spasm (3% to 5%), asthenia (3%), neck pain (2%)

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@lashu

Did anyone explain why your body began to react negatively? Apparently Evenity stops a bone deterioration process, it doesn't have the bone adding process.
But your scores are improved, that is encouraging. Wishing you all good health. Thank you for sharing.

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@lashu that is not correct. Evenity is a potent bone builder especially in the first 6 months, and also had anti-resorptive qualities (stopping breakdown) but more in the last 6 months. This is from my doc and from McCormick's book "Great Bones." I have seen a quote that Evenity "turbocharges" bone growth.

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@lauratys

I don't think the dr really believed me that it was related to Evenity but I have NEVER had aches or pains prior to having Evenity and it did get better over the course of several months once I stopped. I was fine the first few months with only injection site tenderness for a couple of days. I have read other posts here that people had joint pain, muscle stiffness so I don't think I am crazy, ha! Arthralgia is listed as a reaction so I'm not sure why they didn't think it was connected to Evenity. Maybe I am the only patient that has experienced it in this practice?

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Thank you for sharing. When this treatment starts if there is a similar reaction in my body I will at least feel forewarned.

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@normahorn

I have posted this before. It was provided by my hematologist's office then I asked if Evenity would be okay for me.

Adverse Reactions

>10%:
Neuromuscular & skeletal: Arthralgia (8% to 13%)

1% to 10%:
Cardiovascular: Cardiac disorder (2%), peripheral edema (2%)
Central nervous system: Headache (5% to 7%), insomnia (2%), paresthesia (1%)
Dermatologic: Skin rash (1%)
Hypersensitivity: Hypersensitivity reaction (7%)
Local: Injection site reaction (5%), pain at injection site (2%), erythema at injection site (1%)
Neuromuscular & skeletal: Muscle spasm (3% to 5%), asthenia (3%), neck pain (2%)

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Thank you for the details on percentages for symptoms. Did you have any of these reactions? Assuming you undertook the Evenity treatment.

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