Anyone taken Evenity (romosozumab) for Osteoporosis?

No more than usual…😜

I've had 6 or 7 injections now and at this point, on injection day and evening, my joints are a little more achy than usual, and I'm physically tired. I make a point to walk the next day and try to stay active, and by day 3 I'm feeling normal.
My blood pressure hasn't changed much and I've dropped a couple of pounds since my diagnosis since I've started walking a mile or two a day.

i am struggling mightily with deciding on treatment. Tymlos, before the titrating injection pen existed, was too strong for my body to handle its side effects. Fosamax was also a problem for me to tolerate, including feeling ill and having burning boils on my thigh ! i was requesting Evenity next, which is on hold now because the endocrinologist is “concerned about (me having) lymphoma, present or future”, she was also indicating that Evenity, being newer, has less information available. frustratingly, she suggests Reclast. this is not a bone-builder, and is administered in a full year’s dose, which i cannot imagine tolerating. i am underweight and very weak, with no diagnosis, after many tests. i am super sensitive to even laundry dryer sheets and other household cleaners and fragrances. my primary care dr told me to stop looking for the reason i feel so sick. (really ?). i am so fragile and i want to step lightly into treatment for severe osteoporosis. i am now age 59. and it started in my forties.

Amli65, Medicare only cover 80%, so without your insurance coverage you may pay roughly $360+ per month, medicine only. That is what I know.

Any body has muscle pain on right side of waist after Evenity injection? I have had 2 Evenity injections since August of this year. In August, after Evenity injection, 20 days later, I have had the right side of the waist pain, it was hurt when bend over, 5 days later, it was gone. In September, I have had the second injection, one week later, this pain comes back, I can not bend over, it is hurt. I am not sure if this is caused by Evenity. Please let me know any one have experienced this. Thank you.

Hello,
I also started Evenity in August, and will be having second injection next week. I haven’t experienced any issues I can really pinpoint. Sometimes it’s difficult to differentiate normal aches and pains, from the possibility of something new. Looking forward to taking the Evenity journey with you. Stay strong

Hi, Betsee,
Thank you for your response. Yes, let's take the Evenity journey together, since this is a new medicine, everyone's sharing is very helpful. My doctor asked me to skip one dose to see what will happen, so in Oct. I will not have the third injection. The past couple of days, my waist muscle pain has been getting much better, other than that, I don't have any other issues so far.
Will keep updating.

My sister was put on Evenity for one year after fracturing her pelvis and discovering she had osteoporosis. Her endocrinologist said she was a perfect candidate since she had never taken any drugs before. Her dexa scan showed significant bone growth in one year. It is only safe for one year at this point so he put her on Reclast infusions for a year and now she takes nothing.

My osteoporosis doctor recommended that I continue Evenity for more than one year. The attached study shows benefit for up to two years.
Following is an update on my use of Evenity for more than one year.
I have now been receiving monthly Evenity for about a year and a half. The side effects (local soreness and a bit fatigue) seem to be a very slight bit more than they were a year ago… but not sure if that is the medication or other factors going on in my life.
In a month or so I plan to arrange for an updated DEXA scan, as well as CTX and P1NP blood tests. (The blood tests give an indication of how the bones will continue to build with continued use of Evenity.)
I will review the results with my doctor. At that point I will decide whether to continue Evenity for another six months. Alternatively, I will pause Evenity and switch over to a bisphosphonate for a period of time – then return to the Evenity treatment.
I am considering Risedronate (Actonel) as the bisphosphonate medication because it works with my longer-term treatment plan.
Here is the explanation: Risedronate (Actonel) does not last very long. My osteoporosis doc says “It detaches quickly from the bone.” That is good from my point of view since I hope to return to Evenity treatment after a period of time. Biphosphonate treatment tends to interfere with the action of Evenity. My hope is that the risedronate/Actonel will help maintain the bone density for a period of time while my CTX and P1NP blood tests show a return to baseline. I will then return to Evenity. Since the Actonel “detaches quickly from the bone” my hope is that the Evenity will be able to work effectively with a fairly short term use of residronate/Actonel
I will appreciate any information from someone who has experience with a course of treatment similar to this or other information that might be useful as I consider this course of treatment.
Thanks!

Can you have a DEXA and determine whether it might be better to save a whole year of Evenity for later? Have you ever done Tymlos or Forteo in the past? (I have read that you can do Evenity after those but not the other way around.)

My endo doc doesn't do the CTX and P1NP blood tests. I did ask my PCP for baseline tests before doing Tymlos. Interesting that your doc does blood tests.

I am doing Tymlos for 18 months. I am going to ask about getting a DEXA after one year (this month) in case I should save the second year for later. The plan was to do DEXA after 18 months, then do a partial dose (1/4) of Reclast to see if I tolerate it (with hydration, premeds, and slow infusion). After one or two infusions I could then take a break and be monitored.

I like your idea of short acting alendronate! Hope you are feeling safer! I know I am....Evenity turbocharges!