Prolia and renal failure

I have taken 4 shots of Prolia and I have some bone growth improvement. I originally took one injection in 2012 and had severe muscle pain. I was told to stop taking it as I might be allergic. In 2022 a different PC told me I needed to start Prolia because my T- scores were not good on Dexa Bone Scan. I told her my history with Prolia experiencing muscle pain and told to stop in case it was an allergic reaction. She said the need outweighed the skepticism and I should start taking, which I did. I have fibromyalgia, severe scoliosis, spinal stenosis, spondylitis, collapsed L5 and Kyphosis. I took my 3rd injection in March of 2024. In June I was in so much pain I barely could go to store due to fear of falling because I was having trouble walking from pain. Again, doctor told me it could be fiber flares. I took injection in Sept of 24 and since first week in Nov I have been basically in so much pain I have been sitting at home in a chair in heating pads unable to go out unless there is a doctor appointment or grocery shopping, banking and chores. I demanded a MRI because I was afraid I had fracture, which I did not. I do have a very bad back. The doctor has told me to continue Prolia with two more shots. I actually missed Thanksgiving and stayed home in bed in so much pain in left leg. Bought a new bed for $4000 added a tempurpedic topper for $300 desperate to try to find some relief. None. I sit on 3 heating pads. Barely can shop. I clean a bathroom 1/2 at a time. I could go on. I sent money for Christmas gifts and canceled hosting dinner here for the first time in 50 years I’m in so much pain. It is getting a little better. My question is has anyone gone through this? I am dreading to have to take another injection in March and go through this horrid pain. Idk if it’s the Prolia, my back collapsing, or fiber myalgia. Has anyone had a reaction to Prolia?

@diannemr3 An interesting/frustrating dilemma to be in. Those of us with renal failure/kidney transplant/dialysis concerns always need to factor in the effects on our kidneys and all when we are presented with additional treatments. Here is a related thread that was started by @hello1234. It may offer you some additional insight and shared experiences: https://connect.mayoclinic.org/discussion/osteoporosis-kidney-transplant/?pg=1#comment-1186296

Is your nephrologist in the loop of communication for making this decision? I find that communication between all of your medical team [you're part of that team!] is critical for the best outcome for you. Unfortunately, not all doctors are up-to-speed on how a specific treatment will affect our kidney situation, which is where our nephrologist can really go to bat for you!
Ginger

My primary care physician is the one pushing me to start Prolia. I have told him that I will give him my decision after conversing with my nephrologist (who is willing to consult with an endocrinologist at the hospital where she works). So the answer to your question is yes, my nephrologist is in the loop because I have been proactive about including her. My PCP was not going to get a second opinion, while I refuse to move forward without one.

@diannemr3 I hope you can see an endocrinologist. I think primary care doctors rely more on Prolia and bisphosphonates as "first line."

I only have stage 3 kidney disease so not sure if the adjustments to dose and extra hydration and extra time on infusion would help you with Reclast. So Evenity might be something to discuss with an endo.

Great suggestion. My nephrologist is currently consulting with an endocrinologist on my behalf, but I can certainly set up an appointment. I have low stage 4, which precludes all bisphosphonates.