My Experience on Evenity for Treating Osteoporosis

Thanks windy shores for your response. My Dr did not mention the option of a slower start of the reclast to test it. I am in the process of looking for a rheumatologist to get another opinion from the endocrinologist I am currently seeing.

I was just about ready to go ahead with the Reclast until I came upon the review section on Drugs.com. There are not only the comments of unending body aches, joint pain and migraines but some patients commented on extensive hair loss. Have you heard this?

Good luck with your treatments. I hope all goes well. Have you had an updated DEXA since being on Tymlos? I Pray for no more fractures for everyone!

Being an identical twin gives you a great comparison- may I ask if you also have osteoporosis?
Wondering why your sister does and not you if you don’t?
I found social interactions exhausting but didn’t really have memory loss. After stopping Evenity, my mood lifted and my focus returned dramatically. My husband and daughter noticed it so it confirmed my own conclusion.

My experience as a patient and nurse is providers downplay when we report side effects. My endocrinologist listened to me and didn’t try to talk me into staying on Evenity. Though her first recommendation to switch to was Prolia.
After reading about how you can’t stop it and can have worse fractures if you do makes me leery.

@thehuth6 I expect some side effects, but especially the flu-like effects in the first days. My doc thinks that with proper monitoring, I can take breaks from meds.

If I don't react badly to 1/4 dose Reclast, he will quickly give me more. Or we will space out lower doses. I appreciate his flexibility. I have bad GERD so cannot take oral bisphosphonates but perhaps that is an option for you. Taking a lower dose of Reclast more frequently may be the answer for me and replicates oral meds in some ways.

I have a DEXA in late March. I have been feeling stronger and walked 20 miles in two days recently. However, I am waiting to see if I have yet another fracture from reaching for something in the grocery store a few days ag. A lot of pain...time will tell. Even with new strength and improvement in DEXA, I cannot expect to be safe from this kind of thing.

Yes, but my sisters is much worse. Neither of us have had fractures. My sister was an Orthopedic Surgeon’s assistance. She says falls do not result in hip fractures as much as the hip breaks first.
From the time we were 21 we lived very different life styles. She lead a very protective life and my life was military. As a result over the years we became different in many ways but still have that identical twin connection. I tell you that because I believe that is one reason there are differences in our bones.

When I read some of these notes I am amazed, but understand, how much medication is prescribed and discussed. I hesitate to think $ play a part. It’s good this is an avenue for discussion. I’m glad to see the interest. .
I am happy that your Dr. listened to you. The side effect symptoms you had sound very convincing. I think I’m noticing my sister is less effected, her memory recall has improved some and she is following conversations better. Not back 100% but the improvement is appreciated. I have been so worried about her and the information you provided relieved me. I can’t remember another time I did not have answers.

Would like to know what you decide to do about medication. I question Prolia too. I don’t remember another time there were so many concerns about treatment. I made the decision not to use medication, except calcium, at this time based on my scan and dental. I may need to revisit that decision in the near future.

Follow up I posted this in the other forum but decided to include it here. I took 8 shots but was having increased stiffness/pain in my hands and wrist over about 3 months (shots 5-8) but I decided on the 9th. Mainly because of the advantages of Evenity to strengthen my bones I really wanted to complete the 12 months. Well, 3 days after the injection #9 the stiffness started up again and the pain in my hands/wrists has increased so I will be discontinuing it. Though I won't have the 12 months I'll have 9 months of gains which is good and will follow up, probably, with Reclast.

Well coming up on 4 weeks after my 9th injection. Still some stiffness and pain in my joints mainly in my hands but I think it is getting better. Anyway, after a lot of back and forth my endocrinologist suggests stopping now and taking Reclast. He wants to be sure any gains I have made will not be lost. I've taken Reclast before and the worse side effect was some flu like symptoms but tylenol took care of that.
I wished I could have completed the full year but it is what it is.

Well coming up on 4 weeks after my 9th injection. Still some stiffness and pain in my joints mainly in my hands but I think it is getting better. Anyway, after a lot of back and forth my endocrinologist suggests stopping now and taking Reclast. He wants to be sure any gains I have made will not be lost. I've taken Reclast before and the worse side effect was some flu like symptoms but tylenol took care of that.
I wished I could have completed the full year but it is what it is.

My endocrinologist is pushing me to go on Reclast after 2 years of Forteo. I am concerned about all the posts regarding horrific side effects. Glad to hear you had success with reclast with minimal side effects. I can handle a few days of flu like symptoms but concerned about having them continue for the year after it is in you. Good luck and let us know how you are doing.