Anyone taken Evenity (romosozumab) for Osteoporosis?

Hi Everyone! I'm a new member but I was able to read some of your posts before joining tonight. I'm a 66 yr old female with osteoporosis of the hip and spine. Sorry, I don't have my stats in front of me but my treatment began years ago with Reclast. I had a hideous reaction to that drug and vowed never to take it again. Was not a candidate for numerous other drugs and took nothing except C & D for a year to get my courage scale up! From there I went to Prolia, have been on it for years with no side effects other than fatigue for a day or so after. Changed my Endo and continued the Prolia. With no fractures for yrs, the plan was one Reclast (NO!) in April. I fought it but was told I probably wouldn't have that severe reaction again. Primarily because it was the first OP drug I ever took and the years of Prolia were tolerated very well. Early June (2021) I tripped over an unseen bag of potting soil in my garage which sent me directly into a wood pallet (logs, mulch, etc., there). Fractured 4 - 8 anterolateral ribs and acute fractures of the posterolateral 10th & 11th ribs—all left side. Healing has been slow especially on 10 and 11. In November (2021) pain became unbearable, another x-ray revealed an acute fracture of the 9th left lateral rib. How? Nothing I can recall—no falls, just deep pain in that area. Much as I'm not looking forward to exiting with Reclast it now has to be followed with something else, the recommendation was Evenity. With possible heart attack or stroke, I asked for other possibilities. Forteo or Tymlos came up. I've been researching for days and both of those have hideous side effects from patient comments. Scary that Evenity is sounding better—people seem sick and totally miserable on the other two drugs. I'm a month away to something...for those who have experience with this drug, how bad were your side effects? I would really appreciate any comments.

I have been able to tolerate Tymlos by starting with two clicks of the pen and moving up slowly. Full dose is 8 clicks.

Evenity, like Forteo and Tymlos, grows bone, but it also, like biphosponates and Prolia, suppresses turnover. Since you have been on Prolia for years, maybe Tymlos or Forteo would be better-? I would ask your doc.

Everyone is different and those who experience bad side effects are most likely to post on forums!

@windyshores Thank you for your response. I’m a little unclear…2 clicks of the pen. Does that mean you’re taking the full dose at one time (8 clicks total on one day at different times) or spreading out the 8 clicks on different days? My Dr recommended Evenity as first choice. Forteo and Tymlos were mentioned as other possibilities.

Re: bad side effects posted on forums, I wondered why anyone would remain on a drug that intolerable. So I continued returning here for an exchange of support and information suggestions. Realistic, but not so terrifying!

The pen has 8 clicks. I started with a full dose and could not tolerate it. I talked with my endocrinologist about starting with a low dose and ramping up slowly to see if I could tolerate it. I am very committed due to factures, pain and disability.

I started doing ONLY two clicks a day. That is 1/4 dose. I moved up a click every week until I reached a half dose, 4 clicks/day. Then I moved up a click every two weeks until I reached 7 clicks. I have stayed at 7 clicks or a few months now. So still not full dose but doc is thrilled.

I also switched to the morning because I tolerate it better. Side effects vary from day to day but are overall not bad enough to ever consider stopping. The alternative is so much worse!

Do you have any history of heart issues? Evenity precautions emphasise not to take Evenity if stroke or other issues occurred in the past year or so. If you haven't had any heart problems, taking Evenity isn't going to cause them as I understand it. My doctor did set me up for a Coronary Artery Calcium Score, which is a CT scan. My results came out the best possible for a healthy heart. My Evenity start date keeps being delayed but in meeting with my doctor yesterday, she was excited about the great results she is seeing in her patients who are taking Evenity. That was very encouraging for me since it is so hard to find any results. Perhaps because the drug is so new. Good luck, let us know how it goes.

@lilea I've never had any heart issues, myself. However, coronary and stroke issues ride on the paternal side of my family as does hypertension and insomnia. My doctor wanted more x-rays—entire spine—and bone density scan. I was referred to a physiologist to oversee PT. Hopefully this will improve lost muscle in the past 9 months while my ribs were healing. It doesn't help that one is not completely healed and the other, fractured in November 2021 is also healing. My understanding is that I'll have Reclast in April, not Prolia. I don't expect to begin Evenity or whatever drug is decided upon right away. Yes, I'll definitely keep the group posted and will be in the mix to learn about others experiences.

I just started using Tymlos. I have commercial Insurance, no medicare, and I was able to get co-pay assistance. My pharmacy helped me with the co-pay process when ordering the medication.

Thank you for sharing your information about starting Tymlos on a lower dose with fewer 'clicks'. I shared this as an option with my Doctor before starting Tymlos, and she and I decided I should start Tymlos at 1/2 dose or '4' clicks as I always have trouble with medication side effects. I am on day 3 of starting my Tymlos injections at '4' clicks and so far the only side effect is that I am extremely tired. But short naps seems to be helping this enough that I am still able to function. I will continue to try to raise dose '1' click every week, and see if I can eventually tolerate full dose of '8' clicks.

Thank You @betterhealth. I went online and printed out a copay card From Tymlos. I am not starting until June as I don’t want side effects while I am out of country.

Dear @today I'm new to the group and reading backwards. I'm not sure you received an answer to "experience with Reclast?" I do, but at the risk of being redundant, let me know if you want or need that at this point.