Evenity pain

Posted by jeanniebeannie54 @jeanniebeannie54, Oct 25, 2022

I have had 3 months of evenity and my left hip, thigh and buttock are so very painful I can hardly stand, lay down and not walk. Anyone experiencing horrible pain. Help.

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Exactly, good question. I think you may have some gains in later months but if you have adverse reactions then I’d stop and switch to something to keep gains.

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@arely

Question--I just took my 10th Evenity shots. This month after shots I am in horrible pain.I been having pain all along but this month worse.
Has anyone had that issue?
Thank you Arely

2 more months

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Arely, joint and headach pain are the most common adverse effects of Evenity.
Consider 10 months adequate. In the first three months you got the best of Evenity's bone building effects. Inflammation isn't good for your bones and it may take several months for the pain to subside.

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@lauratys

I was fine until month 6 or 7. I then had very bad hip pain initially then every muscle and joint ached so it was very difficult to get dressed etc. I’m 67 active and never had arthritis but felt like I had it thru out my body. I discontinued after 11 months and it took 6 months for those effects to go away. I would have quit after 7 or 8 had I known most bone building happens in first half of series. Had great gains in spine and very little improvement other sites. Just listen to your body as all are different. I was told it wasn’t from Evenity but it was. On Actonel now and am fine. Hope this helps!

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I have been on Evenity for 10 months now. I started to get joint and muscle pain throughout my body after about 6 months of injections. At first I thought I had arthritis but I know I don't because I have had a few xrays and they reveal nothing. Most recently I have had severe right hip pain along with deep muscle spasms down my right leg and throughout my buttocks. I took one Flexeril last night and it took all of the muscle pain away and now I have no joint pain. thank goodness because I didn't know how I could make it through the day today. I will tolerate the next 2 months of injections and then follow it with an infusion of zoledronic acid (reclast). Hope it all works out for all of us.
Thank you to everyone for sharing your experiences as it helps all of us navigate our way through these osteo drugs.

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@laverne23

Has anyone had painful pins and needles on the left side of their face and into the scalp after Evenity injections? Was your cheekbone really tender? This happened very slightly after my second injection (I thought it might be sinus issues). After my third injection, it happened again but was 100 times worse and the pain was excruciating!

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Laverne, I don't have experience with Evenity. But, my canvas reading hasn't unveiled anyone with these symptoms. The clinical trials signaled joint pain, and sinus issues. So it could be swelling in the mandibular joint triggering the nerves of the face and scalp.
They are finding patients with osteonecrosis of the jaw (and/or hip). You might want to talk to your provider.
You've had the third shot, so from my reading you've gotten the best out of the drug. The second nine months are said to be primarily antiresorptive. You could consider making the third shot your last shot but then you'd have decision again-- what to take.
My bias with these drugs is that we shouldn't tolerate side effects. We all want to be brave and it is brave, but is it wise?
I apologize for this inexperienced answer. But sometimes an answer triggers real responses.

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@bmadigan

I have been on Evenity for 10 months now. I started to get joint and muscle pain throughout my body after about 6 months of injections. At first I thought I had arthritis but I know I don't because I have had a few xrays and they reveal nothing. Most recently I have had severe right hip pain along with deep muscle spasms down my right leg and throughout my buttocks. I took one Flexeril last night and it took all of the muscle pain away and now I have no joint pain. thank goodness because I didn't know how I could make it through the day today. I will tolerate the next 2 months of injections and then follow it with an infusion of zoledronic acid (reclast). Hope it all works out for all of us.
Thank you to everyone for sharing your experiences as it helps all of us navigate our way through these osteo drugs.

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Thank you so much for this post. My medical professional made me feel like it was all anxiety and in my head during more than one conversation. My experience sounds just like yours and I, too, took Flexerol on occasion to be able to move without pain/spasms especially in my hip/leg like sciatica. The only reason I didn't do Reclast was I was so "done" with injections and was concerned about how long that stays in the body if I did have a adverse reaction. I wish you well with Reclast and would love to hear your results. Best to you!

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@laverne23

Has anyone had painful pins and needles on the left side of their face and into the scalp after Evenity injections? Was your cheekbone really tender? This happened very slightly after my second injection (I thought it might be sinus issues). After my third injection, it happened again but was 100 times worse and the pain was excruciating!

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My oncologist's office shared this when I asked about Evenity comparability.

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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@lauratys

Thank you so much for this post. My medical professional made me feel like it was all anxiety and in my head during more than one conversation. My experience sounds just like yours and I, too, took Flexerol on occasion to be able to move without pain/spasms especially in my hip/leg like sciatica. The only reason I didn't do Reclast was I was so "done" with injections and was concerned about how long that stays in the body if I did have a adverse reaction. I wish you well with Reclast and would love to hear your results. Best to you!

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I am grateful I could help. Such nonsense to have a medical professional make a patient feel 'small' when they are describing their suffering. I am sorry you had to experience that. I am nervous about taking Reclast however I need to take a strong anti-resorptive in order to maintain the gains from Evenity and oral meds. do not agree with me. What follow-up drug are you taking?

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@bmadigan

I am grateful I could help. Such nonsense to have a medical professional make a patient feel 'small' when they are describing their suffering. I am sorry you had to experience that. I am nervous about taking Reclast however I need to take a strong anti-resorptive in order to maintain the gains from Evenity and oral meds. do not agree with me. What follow-up drug are you taking?

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I started with Fosomax after Evenity and within 4-5 weeks started getting g the joint and muscle pain I had from Evenity. Switched to Actonel and have been on that two months with no adverse reactions. I’m careful to take exactly as directed. Hopefully this will continue to be a good option for me.

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@lauratys

I started with Fosomax after Evenity and within 4-5 weeks started getting g the joint and muscle pain I had from Evenity. Switched to Actonel and have been on that two months with no adverse reactions. I’m careful to take exactly as directed. Hopefully this will continue to be a good option for me.

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That's great Actonel is working for you. I will let you know how Reclast works out for me in the new year. I wish you all the best moving forward. Please take care and talk soon,

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@laverne23

Has anyone had painful pins and needles on the left side of their face and into the scalp after Evenity injections? Was your cheekbone really tender? This happened very slightly after my second injection (I thought it might be sinus issues). After my third injection, it happened again but was 100 times worse and the pain was excruciating!

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Hello @laverne23. I moved your discussion and combined it with an ongoing discussion on Evenity Pain, https://connect.mayoclinic.org/discussion/evenity-paain/, so the members discussing their varying issues with pain after evenity could see your post to share their experiences.

@laverne23, have you discussed these symptoms with your provider? Did they have any opinions on why it may be causing this pain for you?

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