Evenity Side Effects

Thanks for that insight. I’ll talk to my endocrinologist about that!!

I was on Evenity for a year. The only side effect I had was the pain and burning in my arms for a few days. I treated with Tylenol, ice and heating pad. Every time I had the injections the pain was present.

Hi windyshores. Thanks for your reply. I always find your posts very helpful. My endocrinologist does a lot of her own research on osteoporosis medications and her studies have been referred to by Ben Leder. I consult with her on February 20th to discuss my next steps. She did briefly say that they do not know yet if Evenity causes heart problems. I’ll let everyone know if I learn more from her next month.

I have asked my GP to do these tests before I start.

I talked with my endo and with McCormick today and made an appointment with another endo who does do CTX and P1NP tests. I also made an appointment with an allergist to discuss what might have caused my reaction to Evenity since noone thinks it was the Evenity itself (probably the polysorbate 20 preservative, to which I already knew I was sensitive). I will get CTX and P1NP tomorrow- I got three providers to order it today as it happens, since I talked to so many people! All of this happens in the next 6 days and then I will put it all together and decide whether to do a second Evenity or start Reclast.

McCormick and endo differed on whether starting Reclast with a lowish CTX is going to do anything (endo says mine runs low anyway). CTX was 324 before Tymlos and at the end of Tymlos was 186. There is no issue with transition to Reclast despite my probably low CTX.

Endo said that Tymlos does not worsen cortical porosity (another question I had) but Forteo does. Evenity addresses femur neck cortical bone more than Reclast. Both docs agree that after Reclast, effectiveness of bone builders will be less (but still helpful) so Evenity first is kind of my last chance at getting maximum effect.

If I choose a second dose of Evenity, I need to do it quickly so getting all this done fast! Cancellations helped me with all docs today.

I got some differing opinions today and probably another viewpoint next week. I often have this experience. In the end, I guess I kind of collect opinions, cross reference them and still have to decide myself! I don't want anyone to make decisions on what I am posting here since I am getting different info from different providers and without citation !!

Hey Windy. Thinking of you going through all of this sorting out within a very short timeframe. If anyone can do it, it is certainly you.

Just one thought: if the allergist confirms the issue is/could be the polysorbate, I hope there is some way to neutralize that so that Evenity can continue. I would not rule out even considering some sort of Asian approach, like from an acupuncturist.

Best of luck.

@windyshores I found it's interesting that your CTX level at end of tymlos. Was there a trend of decline over the course of tymlos treatment? 186 would place you among the normal range among the normal population. If you repeat CTX this time and came back at this similar level, I wonder how low reclast will push it down, understand that you will be doing partial dose. Is there a 'target' that your endo is shooting for, to maximally preserve the precious gains that you've gotten?

I am confused (nothing new for me). When I had baseline BTM run, I was not told to fast for 12 hours. It is possible that I had a bedtime snack 9-10 hours before the blood draw and I did have a cup of coffee with sugar in the morning. My CTX value was 210. Would I want to lower that further or raise the N1P1 value (which was 50)? Evenity was recommended but I am opposed to the one-size-fits-all approach.

@normahorn apparently some of us have lowish CTX's naturally after menopause, relatively speaking. Post menopause the reference range is 104-1008, and after 70 it is 152-858. I have questions about the effectiveness of, say, Reclast with a CTX that is, say, 180-210, meaning yours and mine!

My P1NP was 54 before treatment and after 18 months on Tymlos it was 40, then 35. Reference range for normal is 16-96 in one lab and 20-108 in another lab for under 60 years of age. I wish I knew what it was while Tymlos was active because after 18 months it wasn't.

Tomorrow I am having both tests after one shot of Evenity and will post my results. That might help you with the decision-? I expect P1NP to be high (if it is working) but CTX not yet affected by Evenity since it was one shot.

So just to share progress so far today:

My endo called me last night and ordered CTX and P1NP and I made a lab appt. for tomorrow, fasting. He does not usually do these tests and explained that they don't tell us everything that is going on with bone. (McCormick and my other endo do rely on them with caveats.)

I got a cancellation appointment with an allergist today (I really like him, used him before) and he does not think my immediate reaction of abdominal tightness after Evenity was an allergy. He said side effects can in fact happen quickly and also that the monoclonal antibody rososozumab (Evenity) is a large molecule/protein and the body may not recognize it (18% of us develop antibodies by the way, that do not affect effectiveness). So there could be a sort of reaction that is not allergy, but it could also be a side effect. He suggests doing shots in thigh, pausing between, and doing injections in a hospital office where I can be monitored.

The reaction I had was this intense tightness (felt hard to breathe) below the diaphragm for 4 days with some tingling of hands and feet- after the shot. In the last two days it has come back more, even though I had the shot on Dec. 26th. Last night my daughter slept in the room with me and said I was distressed in my sleep and breathing deeply and very fast and I woke up feeling unable to breathe. It was just my chest tightness. My lungs were fine,

But guess what? I am inclined to do Evenity again regardless. I feel like this is my last chance for full effectiveness of bone builders though they will still work 50-60% after Reclast. Tymlos gave me huge gains but my femur neck is still -3.6 (more cortical and Evenity helps with that- Reclast may too, I need to find out). Question is, how much should I endure in terms of side effects for how much gain?

On Tuesday I see a second endo who does rely on CTX and P1NP and does them frequently. I will discuss side effects with her. I can check just about every one on the list! Next Evenity is scheduled for Thursday. In the meantime I am trying to schedule Reclast in case I decide to do that now instead. Whew!