Long term side effects of Evenity

Thank you for your reply. Did they put you on another osteoporosis medication after you where finished and if so what med ?

Yes, it is Prolia twice per year. I had the first one this month. I have digestive issues and for me Prolia was a good choice. However, I have to watch my teeth. On the Evenity, I had to have a tooth removed under the gum as a crown broke off. I had a total hip replacement years ago, but I didn't want to take the chance of a gum infection going to my hip. I had a broken jaw years ago, so I know what happens when if /when they have to replace a jaw joint. The whole point of treating my Osteoporosis was that I have a back injury from a fall that did not heal and I have needed surgery to fix it. I can't walk or stand for over four minutes at a time. My surgery is scheduled for the end of next month. You just have to weigh your risks and decide what to do. If I had no broken bones, I probably would have stayed away from some of the meds. But, after having a Burst Compression Fracture from falling on my knees, I don't want to do this again. I hope you get better also.

Hi all, just making a comment generally. When those of us go to the drs and find out our density is decreasing , before you start taking the meds for that , any of them , you should be requesting those drs to be doing the testing to really know better what and why this is happening. Then you have a baseline. Like for example Bone marker tests—CTX ,P1NP, a 24 hour urine test, etc…. Choosing to go on drugs, or not, and if so which one is better guided in this way. One size DOES NOT FIT ALL in this realm of medicine. Good luck to all!! Do your homework , and don’t be afraid once you understand the information better have these conversations with your drs.

You may know already but most bone building benefit is in first 6 months. Listen to your body as I had adverse reactions after month 6, quit after 11 mos but had good gains. I do wish I had stopped sooner and switched to Foxomax or something. I am still experiencing joint/muscle aches I never had and am in good shape and do all the other diet/supplement things. Hope you do well!

Thank you for your reply. I am thinking in terms of the same stopping at 6 mos. I just did injection #2.

If you are experiencing any joint or muscle pain I would switch at 6 months. The 11 months definitely has caused ongoing pain which faded quite a bit until I was on Fosomax for 6-8 weeks and now I have the same hip pain that isn’t intolerable if moving but when I stop it’s not good. I’m going to be going to another bone health group to get a second opinion as this has altered my lifestyle/ability to exercise which is discouraging. I wish you the best and glad you’ll be aware as I was not.

Yes, I took my first Prolia shot this month. I had wished there was another drug that I could have used but they all seem to have something going on with each one. I am supposed to get two shots per year. There are a lot of warnings but they all may not happen to you. I had broken bones in my back that needed fixing from two years ago and the surgeon had told me that I had needed to strengthen my bones first. I will be having surgery at the end of next month. My regular doctor had prescribed the Evenity but they could not give the shot in their office. I had to go to an Oncology/Hematology Group with the same hospital organization.

I also was very informed and had my endocrinologist order all the bone markers testing also did 24 hour urine and many more testing . Everyone needs to ask for these if the Md does not order.

Hi! I’m Kathryn and I’m going on 82 years old. About 23 years ago I was diagnosed with Panhypopituitarism which means I don’t have a pituitary gland anymore. It took me nearly ten years and seeing many doctors to get a firm diagnosis. By that time I had all sorts of physical problems, one of the worst is osteoporosis. My entire back is a real mess with rampant spinal stenosis and many broken discs. Several years ago I was talked into getting back surgery which was a huge error as the surgeon made a giant mistake. The head of the hospital got in touch with me and told me of the surgeon’s error and advised me to get an attorney. I did just that and won the case. It really doesn’t matter if one receives financial recompense if one has ended up with worse pain than was present before the surgery.

I have a very difficult time getting the amount of exercise that I feel would be beneficial given my physical condition. The residual effects one gets as a Panhypopituitary patient are many - one is losing a great deal of bone tissue which has caused me to lose three inches in height which won’t grow back. The level of pain I now live with stops me from living some sort of normal life. I take lots of replacement hormones and many other types of meds as the Panhypopituitarism is really tough on the body as a whole.

If there’s anyone reading this message who has also experienced Panhypopituitarism and is trying to develop some semblance of a normal life, please share your experiences. Thanks ever so much!