Stopping Evenity Early

I just saw this. You are smart to stop. I did 11 months. I had ZERO symptoms when I started other than low DXA scores. I feel like I have myself arthritis. I am active 66 yr old and love hiking, mountain biking etc and now feel like if I fell I’d snap! Everything aches and feels brittle which sounds odd but I didn’t feel like this before Evenity. Good news is 49% bone density increase in spine but what has it done to the rest of me? Idk but would love to know if these negative side effects disapate. It’s discouraging to have these side effects. Last injection was in February. My hips feel a bit less achy once I move around but shoulders and arms, wrists not great. Had none of this prior to Evenity. I don’t think it’s coincidence.

I wish we would not buy into calling these problems side effects when they are adverse reactions. I would encourage anyone harmed to file an adverse reaction form that is on the FDA website. I believe there is also a number to call to report them.

https://www.pharmacytimes.com/view/adverse-event-not-the-same-as-side-effect This helps clarify the difference for those of us who are not medical professionals and who may use “side effect” and “adverse reaction” interchangeably. I do think though we get the idea…something negative happened that we didn’t hope for! Hope everyone’s outcome is a good one!

I received the information below when I asked my Hematologist's office if Evenity might be contraindicated for me. The source of the info was not provided but I noticed the use of the term "adverse reactions."

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%)

Hi, Melanie1
I stopped Evenity after the 6th dose. I had muscle spasms, headaches, jaw pain, tinnitus, BP spikes. I was then put on Alendronate and developed daily migraines after the second dose. Of, course, they had to rule out a brain tumor! The migraines stopped 15 days after my last Alendronate dose. Right now, I am taking 680mg of strontium citrate daily. I'm hoping to get a dexa early to see what my bone density looks like. None of the osteoporosis meds are without challenges. Just check the blogs that discuss the research on the effectiveness of Evenity for reducing fracture. For me, the side effects were not worth the small improvement in fracture risk.

I’m sorry you are going through this. I got tinnitus during my 5th week on Forteo. My doctor took me off the Forteo and wants me on Evenity. I’m wondering if the tinnitis went away after you topped the Evenity and how long your were on it before it presented.

Hello
I stopped Evenity after 7 injections. I had 5 weeks of unrelenting coughing. I could not speak, sleep or go thru a day without coughing. I had every test, steroids, antibiotics, EGD all normal. After 5 weeks it faded away. I had a DEXA and had 40% improvement in my spine. All other sites remained the same. I switched to Reclast. I’ve never had arthritis but prior to the Reclast, I developed it in my knees, wrists etc. It has altered my quality of life.
I have been encouraged to report to the FDA website. They are most concerned about fatal events. But we still have active lives to live, so let’s report so the true impact of the drug is available to others.

Hopefully this link will take you to the online reporting portal.
https://www.safetyreporting.hhs.gov/SRP2/en/Home.aspx?sid=5755496a-9d1e-4061-81de-10e46384674a#:~:text=The%20Safety%20Reporting%20Portal%20(SRP,%26%20Drug%20Administration%20(FDA).

Hi, Sue6
I first noted tinnitus after my 4th Evenity shot. However, I noted jaw tension at the joint prior to noticing tinnitus. It has improved since I stopped, so has the numbness in my fingertips. I think the itching I was experiencing was more related to nerve issues than allergies being triggered by Evenity. People have reported no side effects with these meds. I wish I were that lucky. Best wishes in your journey.

I’m glad the side effects you were experiencing from Evinity have subsided. This is not an easy journey that we are on. I saw a video which stated that 100 people would have to be treated for one to avoid a fracture. Is that what you were referring to about the small improvement in fracture risk? That is pretty glum.