Evenity Side Effects

@cincy.@leslie2121, yes Evenity is the first osteoporosis drug I have tried. I am ready to stop this drug and not try any others

Can you share how and why you came to this decision. Thanks

Hi! I have had severe back pain that started two days after the injection. I am on day 4 of severe back pain. Doctor says if it is from the Evenity it should pass. If it is from Evenity and does pass I may consider one more if it passes soon. I don't think I can do another if this lasts for weeks or months. My first injection gave me chest tightness but passed. All these drugs seem to carry the same side effects. Would be hard to choose another if the outcome is the same or worse. Any suggestions?

@rjkesal123 in my experience side effects with Tymlos were very different from Evenity's and I had excellent gains. The key for me was starting at a low dose and moving up, as well as hydrating. The Tymlos pen has adjustable "clicks." Also, the effects leave in 2-3 hours. The half life is only one hour.

I have done Evenity full dose one month, and then two months of a half dose. I just talked with Keith McCormick. The P1NP value is still not high enough to indicate robust effectiveness. However, he thinks I should either do a full dose (2 shots) or talk to my doctor about doing a half dose (one shot) every two weeks. Those are two ways to keep a steady state, I assume. (The burning and pins and needles stopped in the third week...)

I asked about doing 6 months Evenity and then doing Reclast for the second 6 months since it is anti-resorptive and so is Evenity for that period. However, I looked it up yesterday and he confirmed that Evenity is much much better for femur neck (cortical) and unfortunately most of the effect on femur neck is in the last 6 months. First 6 months gain there is 2.8% and 12 month gain is 7.5%, Reclast won't do anything near that, according to McCormick and what I could find by googling.

McCormick has 55 patients on Evenity. Last time he told me 40% have joint pain, but today he said only one had it for a period of time after stopping. My concern has been that there might be unknown effects on the body by inhibiting sclerostin, especially arthritis and the immune system, but he seemed to think not.

I am willing to endure these strange (burning, pins and needles) and often painful side effects (joints, muscles) to improve my femur neck, as long as it is safe to do so.

I have had osteoporosis for 18 years now believe it or not. Cancer meds made things much worse, and docs did not want to put me on Reclast due to afib.

I spent years trying to get ON medications. It isn't that there were side effects: they were not tolerable, more like an allergic reaction. I even went to an immunologist. COVID interfered with me going on Tymlos and the delay meant several fractures. I want to be independent and those fractures really threatened that. I am posting so others can feel similar motivation before suffering fractures!

Thank you windyshores. Can you share what your side effects were on Tymlos ?

@rjkesal123 I first tried the full dose and felt overwhelmed by wooziness, headache, maybe chest pressure- I forget the rest to tell the truth. I backed down to two clicks rather than 8 (20mcg vs 80mcg) and worked up as quickly as I could, in communication with my doctor. I ended up doing 7 clicks (70mcg) and never really tolerated the full 80mcg. Strange that that one last click made such a difference!

I have low blood pressure and bought a blood pressure cuff which I only used the first months. For me, morning was best (I tried bedtime) and, oddly, moving around helped. I hydrated and ate something salty too. I just felt woozy (for an hour or two) and over time, some fatigue. I took 3,000 units Vitamin D3 because I read that Tymlos "eats D" and that level stayed steady.

Did you say before the Tymlos you tried Evenity?

No @rjkesal123 I did two years+ of Tymlos, and am not trying to get a little more growth, especially for my femur neck, by doing Evenity as long as I can stand it!
I had excellent gains on Tymlos. It works! 20% in spine, going from severe to borderline....9% in hip. But femur neck is still 3.6.

rjkesal123, Evenity is said to leave your system within 65 days, sometimes lingers for 85. The burning is the effect typical of Evenity. Some don't experience that and I'm more like you, never suffer willingly. I'm amazed at some of these AMAZONs like windyshores. She's a very reliable, sensible source of information.
All these meds are not the same. I'm on Forteo almost a year with no side effect. But for some it's misery. If you try these medications and don't fine one that is kind to you, you might decide to take one anyway for fear of fracture. I hope you don't take the next injection and switch to my favorite drug. But I also hope the burning abates. The drug can make your joints feel stiff because it tends to cause edema.