Anyone taken Evenity (romosozumab) for Osteoporosis?

I started Evenity in October 2023. My alkaline phosphate is 139. I may have to switch or stop my treatment altogether.

Hi @myrnoll and @marianne1358 I have been on forteo, an anabolic for more than a year. It was clear that my serum Alkaline phosphatase (ALP) was increased to 130-150, from a baseline of 75-90 right after the start of forteo. My endo said its normal. I read that an increased level of ALP usually is due to some problems of liver or bone. Since bone specific ALP increases with the use of an anabolic, we would expect total serum ALP to increase also?

@myrnoll, did your doctor think it's a good idea to stop evenity because of the increased level of serum total ALP?

I have had two doses of Evinity so far and have been experiencing fatigue, depression, brain fog. I am also going down on my Cytomel (this was prescribed many years ago for depression, and I want to get off of it for my bone health.) I realize some of my side effects could be from the cytomel reduction but I seem to have adjusted to that. I also have significant pain on the left side of my neck. Has anyone had any of these side effects any input would be helpful thank you!

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.