Struggling with making an osteoporosis treatment decision

I am also in Florida. I am seeing an osteoporosis "specialist" in Orlando and she is encouraging me to go on osteo meds. Before my bloodwork, and just based on a DXA, she leaned toward Evenity. During the second visit, since my CTX was high, she was leaning towards Prolia. My third visit is in about a month and I am guessing she will continue to suggest Prolia. I am doing whatever I can to avoid prescription drugs because they scare me. (I purchased a Marodyne LiV platform, am eating 6 prunes a day, eating mostly organic and healthy foods, walking daily, strength training 3x/week, avoiding alcohol and limiting caffeine, taking quality supplements and collagen). I am researching bioidential HRT, but I am 16 years post menopause so that may be risky. I plan to ask my osteo doctor about HRT and I am guessing she will say no. I am also in the process of searching for a second opinion since I predict my doctor will disappoint me again during the next visit. I am considering Dr. Bush at Central Carolina Othropedic Associates (who uses Echolight REMS); Mayo Clinic in Jacksonville; a functional medicine doctor locally (if I decide on bioidential HRT).

i had 1 peolia shot last november and i can say i am so sorry for doing this i had a severe reaction from it and affter 6 wks of taking it had my forst compression fracture but by the time it was diagnosed there was no surgery required. supposed my 6 month prolia ended in may and in august ii had another compression fracture that is still healing. my dr wanyts me to go on eventity and i am fearful.. the prolia left me with such pain that was constant i was and am still taking prednisone to help although i am weaning off it now. the drs know very little of these drugs and what they can do to a person.. i can honestly say it ruined my life and i know i have severe osteoprosis but i don't know what to do

@pennykj Thank you for sharing your experiences so far. Can you tell us about how much a Marodyne LiV platform costs and how long you have been using it? I have decided not to take the Osteoporosis meds and want to do all I can to slow my Osteoporosis

Thanks and good luck with your upcoming doctor visits.

I have traditional Medicare with a Part D drug plan.
The Part D drug plan denied Evenity coverage. I appealed the decision twice and it was still denied. Can you explain if your doctor orders the Evenity and bills it as part of the treatment plan to Medicare Part B?
I am currently on Forteo with some positive results but have been on it over two years. It was authorized for a third year for some people. I have no side effects. The Part D drug plan picks up most of the costs after the deductible is met which still leaves me with covering alot of the costs. Was on Bisphosphates for 15 years with increasingly worse bone density.
Any advice re getting Evenity covered would be much appreciated.
Nancy

What kind of severe reaction did you have from the Prolia. And, do you think that drug possibly had some connection to your compression fractures? On my last DEXA scan my total hip was -2.4 and my lumbar spine was -3.2, which my endo Dr thinks is severe. I'm having another scan in two months. I'd like to avoid any of the meds so don't know what to do.

Seems so crazy that there are so many variations in how treatments are covered and paid for. I also have traditional Medicare and a Part D drug plan plus a Medicare supplemental insurance plan. Since my Evenity shots are administered at a hospital infusion center, not a doctor's office, once per month, Medicare negotiates and pays a certain lessor portion of the total cost, and then my supplemental insurance plan pays the remaining 20% of that negotiated cost. The Part D insurance doesn't come into play at all.

within 48 hrs i was in severe pain could not really walk or open my hands went to my dr he gave me a steroid pac i took the first line and by the next day all the pain was gone so i thought. the minute i was off the steroids the pain came back.it was my whole body a burning deep penetrating pain that i couldn't sleep walking and moving was very painful my whole body just ached. i was put on 20 mg prednisone and that helped somewhat but i was never without pain. as the months went on and the shot was waning the pain got better and then i was told i had ra never had any o =f this before the shot so yes i do believe the shot did alot of damage and i beliee it is still doing it. do not take the prolia shot 6 wks after having the shot i had my first compresion fracture but did not know it until it was pretty much healed. very painful then my 6 mos with prolia was up on may and this past auguat i had another compression frxture. they say that happens whwn you stop the prolia and i only had 1 shot. i am so angry with myself gor not checking it out i trusted my dr and now will suffer with side effects for the rest of my life such as fractures i can only say the fda did not vet this drug properly and drs are giving it out and know nothing about it ir how bad it can be nope this helps

@meganstpaulmn I have several fractures in my spine and totally agree with you on the pain. I never wore a brace much because I was told muscles would weaken but stayed in bed a lot.

Regarding HRT, as a breast cancer survivor (so far) I would just caution people on that risk. My cancer was driven by estrogen even after menopause.