Anyone taken Evenity (romosozumab) for Osteoporosis?

Yes to side effects though I had serious COVID in Nov. Lots of burning sensations, complicated dreams. Most people do really well without side effects and I have more issues with meds than most (immune system problems).

I did two years Tymlos and it seems Evenity is not increasing bone formation but rather anti-resorption. My CTX is really low. I read that Evenity stays in the system 65 or so days. I think I will do one shot today and then ask if I can take April off, do Reclast in May. If Evenity is anti-resorptive at this point, I might as well do Reclast if that is what doc says is best. I see him mid-month.

I also was on Forteo for 7 months and felt great, but my ALP rose so my dr took me off of it and I started Evenity. I’ll have my 8th injection in a week. I would love to go back on Forteo but not sure about the timing. Maybe a couple years of Reclast first?

How is your ALP after switching to Evenity?

Hi jillgirl
Within a couple of days of my first set of injections, I got a cold sore. I hadn't had one in years, so I knew it was related. It just seemed like I was the only one with this reaction.
Mine actually wasn't very bad, because I use a European lysine cream that helps if you put it on as soon as you feel the tingling. I also take collagen peptides everyday--they include lysine. Last week, I had my second set of injections, and, thankfully, so far, no cold sores.
Have you only had the first injections so far? Let's hope our outbreaks were a one-off.

I stopped after my 2nd injections of Evenity due to numerous adverse effects including fatigue, brain fog, stiff and painful neck and shoulders and back, random muscle spasms and daily headaches and vivid weird dreams at night. It's been 2 months since I stopped and I still have most of these symptoms - but they seem to be less frequent now. I hope your body adjusts quickly and you don't continue to have problems.

I like to get an opinion from my primary physician, rheumatologist, and family members who are knowledgeable with my condition before stopping Evenity. I will post my decision in few weeks. Thank you for your thoughtful comments.

@windyshores Hi !! Always look forward to reading your posts, though I've not been here for a while. Looks like you moved on from Tymlos to Evenity? We had a back and forth about medication sequencing (I was on Prolia for many years—no side effects). In November 2022 my endo switched me to Reclast, the drug I vowed never to take again due to a horrific reaction. I've now had 2 rounds (2022 and 2023) with no side effects from either infusion. Round 1 helped my spine but L hip remained the same. Hopefully something more will kick in from the Nov. 2023 infusion. Supposedly I'll go to Evenity next November. From there, who knows? Wishing you the best on that mid-month appointment.

Still slightly elevated. That may keep my dr from putting me back on Forteo.

Thanks for replying! I took my second infusions today. I was advised to take half of one Valtrex pill to prepare for a second blister outbreak. Before the outbreak I was feeling as if I had a virus, then wham! They think it is related to Sjogren's, an autoimmune condition I have. I can assure you the drug companies had zero persons with Sjorgen's in their testing/control group for Evenity. I reported the incident to the drug company. Wishing you good luck.

Hi giannam! I am so so glad to hear that Reclast has been so tolerable. Glad you came back and keep us posted!

I am sending you a PM.