Evenity Side Effects

My Dr took me off Evenity because of all the side effects I have. As I mentioned in previous posts the most scary one was memory loss. He is putting me on Reclast. I’d appreciate any info on Reclast from those who have had the injection. Thank you

I'm curious, your injection site is abdomen. Is there a reason for it comparing to arm injection?

Second time I had my injection in the thigh. @mayblin my arms are very thin and I have trouble with shots there. My tummy has more padding 🙂 My kid has type 1 diabetes and so I also know absorption is faster there. Since I had such an immediate reaction with the first shots, I decided to try my thigh. The allergist suggests that my reaction might be milder there. It was certainly slower.

This makes total sense, you've been through so much!

I wonder if Tylenol and Claritin could be used to alleviate some of you discomfort. Both have liquid forms and you could adjust dose to your like.

Wish you have a speedy recovery from those unwanted side effects soon!

I called Amgen today about the possibility of taking half dosage. She indicated it would be up to my doctor to approve the off label usage.. If I understood her correctly, weight was not a factor in the study for approval. I pointed out several times that full dosage for me would result in my receiving 5.7 mg/kg whereas the initial studies used 3 mg/kg dosages. I am sure FDA did not approve administration of almost 6 mg/kg.
I would gladly sacrifice some gain for safety.

@normahorn I am just going to decline the second shot. My ideal dose is 135mg. Two shots is 210 and one shot is 105mg. We have the right to decline! The doc isn't prescribing, we are declining.

Yes, I am the one who posted about declining after one doctor mentioned that as an option to me.

The NP at the osteoporosis clinic reluctantly had agreed to half dosage for the first 2 months but is adamant regarding full dosage after that. I am not willing to commit to that. I want the second syringe saved for the following month and would far prefer to be upfront so that can happen. I wish we could get Amgen to acknowledge the option so we would not have to fight so hard to do what is right for us. I can foresee another battle trying to get a trial dose of ReClast with her attitude.

Mybe all of us lightweight need to contact Amgen to enforce that this is not an isolated request.

@normahorn did you get them to save the second syringe? This is costing me $427 and I am only getting half. It may be too late this time but next time I will tell the nurse I want to save it. Part of the charge is, no doubt, administration in the office and I wish I could do it myself. I would do 1 1/3 syringes!

Another issue is the longish half life so there is still some Evenity still active at 30 days, hence the "steady state" after the third dose.

I have pins and needles all over. Tolerable but at the full dose, it could be hard to tolerate.

Did you continue with one shot or did you stop?

I have not started yet and may not. At first she stated that she was prohibited by state law to go off-label when I started exploring half dosages and then came around that she would do that for the first 2 months. At our initial appointment, I asked how long the drugs would be in my system if I had a reaction. She told me that Evenity would clear in a couple of days and Prolia in about a month. Then she tried to put me off when I asked if I would be starting a life-time commitment to medications. I know plans can and should change at times but I wanted to know what the basic plan was. My confidence in her is not great, to say the least.

@normahorn she is incorrect about clearance of Evenity from the system. This info is easy to find online. Peak action is days 2-7 with the average of 5 days, so not only is it not gone "in a couple of days" but it is peaking. Half life is 12.8 days after three sets of injections which means it is half gone at that point. That also doesn't cover the biological half life or how long the effects in the body last. I believe I saw 85 days for that but cannot cite.