Evenity pain

My doctor is suggesting I start going on Evinity. I'm petrified and don't know if I should. I was doing perfectly fine on Prolia for about 6 years, then when I switched to Reclast last year I had a severe decrease in bone loss. Prolia always kept it stable. I don't know if I should just stay on Reclast to prevent further bone loss or what to do. Any advice would be appreciated

All of these drugs seem to be very personal meaning that everyone has wildly different reactions to them.
I’ve had three Evenity injections and seem to do okay with it. The only side effect is that I am very tired the next day.

Thank you :o) I appreciate your input with this. I'm just very scared to even start trying but need to find a plan :o) Wishing you much luck :o) Sheri

Sheriv,
Someone posted on here recently about how anxiety increased their pain. I find this to be very true.
Once you get caught up in an anxiety spiral, you feel terrible, pain increases, thinking clearly is more difficult, etc.
I try to remember this, but I am a SLOW learner.
I just got Keith McComick’s book “Great Bones”.
It’s 600 pages long, but is a great reference book. I do plan to read the whole book because I want to be as knowledgeable as I can about osteoporosis and treatment. I went straight to the chapter that talks about Evenity. The results from Evenity were way better than any other drug.
Spine BMD 11-14% in first year. Hip BMD 4% in first year. He lists the common side effects as: joint and back pain, colds, headaches,and injection site reaction.
Rare side effects: cardiovascular risk, necrosis of jaw, atypical femur fractures.
I have committed to a year on Evenity and have been fortunate that my side effects are only fatigue for a day. Or so it seems.
I was happy to see that Dr McCormick also recommended bifosphonate after Evenity which is what my two doctors wanted.
Back to anxiety. When it runs away with me, I try to remember that I have dealt with more than this, that I can manage this, and then I do some breathing exercises or some yoga. I feel much better and my pain decreases.
Sorry for long messsge.

Oh I appreciate your long message. I freaked out yesterday and messaged my doctor about letting me just do the reclast infusion so I can think about the Evenity for another year. It may be the wrong choice, but I am legit petrified over this. I tend to jump in with both feet without thinking things through, but this, for some unknown reason, is stressing me out like I have never been stressed before :o( I just hope I'm not making the wrong decision by waiting another year. I looked into getting a second opinion also, but without a referral I'm not able to and I can't bring myself to ask my doctor for a referral to another doctor for their opinion :o( I just wish this was an easy decision to make. I appreciate your information beyond words :o) Hugs, Sheri

Susan,
I just had a long conversation with the medical assistant at my doctor and she highly suggests that I do the Evenity wth my history so I told her to go ahead and get it set up. I am legit petrified, but from what she said could happen with me not building any bone at my age, it won't be good. That scares me even more. Hope it's ok if I keep in touch. Not sure when my first shot will be yet, she has to check insurance. But, you've been so sweet responding, I just wanted to let you know. Sheri

Sheri,
My treatment for osteoporosis has been sketchy. My gynecologist tried to get me on Boniva ten years ago and I refused.
Later, a bone specialist put me on Forteo. I was the last person who could give themselves an injection, but I did it for four months. The bone doctor was getting the Forteo from a drug rep for me. I couldn’t afford the cost of it. This ran out and I wasn’t on anything. I believe this really hurt me. I know that the four months on Forteo impacted my bones positively.
Tragically, my doctor fell at home and broke her neck. Seriously. She was in rehab for a few months and was directing her patients from there! I had had a dexa done and she called me to discuss. She said she would be back in office in a couple of weeks - in a wheelchair.
The next week, her nurse called me and told me that she had died. Nurse said that there was six months of Tymlos in the frig and that Dr L would have wanted me to have it.
So…. I was sad and grateful and used the Tymlos.
Now, that is a long story. And, kinda off topic. 🙂
I benefited from both of those drugs.
I have a rheumatologist and an endocrinologist following me on the Evenity.
Maybe your second opinion could be an endocrinologist if you don’t already have one.
I have my 4th shots in couple of weeks. Will report on that.

OMG Susan, my heart :o(((((( What a sad story, but it just shows that you found the right doctor also because she took care of you and cared :o) That is so rare. So the Tymlos and the Forteo are the same thing....the shots you give yourself? Are the side effects the same as the Evenity? Does it cost less than the Evenity? I have no idea of the cost of any of it yet because they have to check with my insurance. When I was on Prolia (every 6 month injection) it was like $2,700 a shot. Luckily they had a co-pay assistance program and I never paid more than $25.00 for the injection. I'll have to look into that for these drugs. Yes, definitely let me know about your 4th shot! Thank you for sharing your story :o((((

Sheri,
I think Tymlos and Forteo are slightly different, but in the same category. I didn’t have any side effects from any of them. I couldn’t afford them, though.
I’m on Medicare now and it’s covering the Evenity.
I recently received an EOB from Medicare reporting on what they’ve paid for in the last quarter. I was shocked to see that the Evenity injections were $5,359.20!
Shockingly, I recently had a hip replacement and the surgeon’s charge was $5,300! Unbelievable.
I understand your anxiety regarding going on the Evenity. The first ‘infusion’ I had, I was terrified. It went fine and they keep you there for awhile to make sure you’re not going to have a reaction. The third time they told me I didn’t have to stay because I hadn’t had a reaction the first two times.
I told them I would prefer to stay anyway 😳.
I did get the book ‘Great Bones’. I put the DEXA report in the book on the page that explains the scores. When I look at that, I feel motivated to continue the Evenity.
These are hard choices. I understand your fears.

Oh my goodness. There is not a chance I could afford a $5,000 plus shot :o(((( Gosh though, reading your posts are so helpful and you really do put my mind at ease over this. Money will definitely be a factor. My doctor said she would look in to payment help so I would have to wait to see what she finds out. Thanks you also for the recommendation on the book! I'll look into that. I'm so very glad the treatment is working for you and you haven't had any reactions so far :o)))) I look forward to hearing more. Have a wonderful weekend! Sheri