My Experience on Evenity for Treating Osteoporosis

My story was very similar to yours. Diagnosed at 57 (had to convince doc to prescribe dexa), referred to an endocrinologist who said I needed Reclast. I also am very susceptible to drug side effects. Doc didn't really discuss any other options, I was sleep deprived and freaked out and it takes me awhile to process information so I didn't really know what questions to ask. After some grief and a lot of reading I decided to take a step back. Changed diet, gained weight, started weight lifting and balance training. Took a year of talking to various doctors until I found a specialist and decided on HRT instead of osteo meds. I was a bit worried about that too as I am 8 years past menopause. But I feel a lot better, wish someone had told me about hormones earlier. Next dexa in March, we'll see. Good luck to you!

Need to correct numbers: Estrogen at 12 hours was 60, not 0.6

wish I could type: manufacturer Estrogen was to be 50, not 0.5

So - my estrogen became 60, higher than manufacturer estimate of 50.

I started with Giant cell disease November 28 th 2023 taken into hospital put on a drip of 100mg of steroids. 6 weeks later allowed to visit NZ and got Toxic Epidermal narcosis where my immune system attacked itself so in hospital for three weeks horendous symptoms. Currently back in the UK and am working to be off steroids by next August. On a weekly injection to help my immune system then two months ago was given eventy to help my bones as I had a spinal collapse in September. I have started aqua robics last month and am trying to improve my health. Question has anyone else had their hair go very curly and the new growth return dark not grey. Also I have constant respiratory cough and wheezing my specialist said it’s due to the drugs I inject myself with. Anyone else have the same. Brenda

Thank you so much for responding! We sound very similar. I am a delayed processor as well which is so difficult in a medical setting. I didn't realize until I had gotten home that my doctor had muttered something under her breath about a consultation at an osteoporosis clinic, but that they would say the same thing (reclast).

Do you mind if I ask what your t-scores were?

I would love to hear what your dexa scores are in March!

What really has me a bit irritated at the moment is that when I asked about trying to make lifestyle changes, she said that if I went that route, the soonest I could get another Dexa would be two years from now and what if I got way worse in that time. And yet, if I get reclast, then I get dexa a year later. It's all down to the insurance company apparently. But the other very real problem is it takes nearly a full year to even get an appointment once your doctor puts the order in. Side bar, but by the time I get my colonoscopy in June, I will have been waiting almost TWO years from the time my doctor put the order in. (OK, rant over)

I have rescheduled my infusion from January 3 to January 30th to allow me to have another appointment with my primary to ask about the osteoporosis clinic and to see my dentist to make sure my teeth are OK. Depending on what happens at those two appointments I may push it out again.

I feel ridiculous even typing this, but the problem I'm facing currently is finding a vitamin D that I tolerate. Years ago I took prescription vitamin D and had absolutely no problem with it. I couldn't even tell I was taking anything. So why I'm having problems with over the counter vitamin D has me flummoxed. It's hard finding supplements when you are a celiac. So many are contaminated with gluten. Anyway, I stopped trying over the holidays because didn't want upset stomach or diahrea. My next attempt will be a vegan formulation.

Please don't feel ridiculous about any of it, your feelings or reactions, which are justified and very understandable. I can't recall at the moment but lowest numbers in femoral necks, between -2.6 and -3, around that in hips too, oddly no osteoporosis (as of 2023) in spine, or very little if I recall. I too asked about going to physical therapy and she said PT is for when you have an injury. I read so many conflicting reports and advice, became kind of obsessed, then hired a personal trainer close to my age and happened to find a physical therapist (went initially for a labrum tear) who knew a lot about osteoporosis and I got a script to see him for exercises, so at least partly covered by insurance unlike my personal trainer, though she is well worth it. I've also been very low in Vit. D over the years, have some absorption issues but not celiac, and take 7,000 most days. I'm so sorry about the celiac, that is just an insult to injury. Have you looked into Vit. D drops? I don't want to presume your financial situation but it sounds like Dexas aren't very expensive (relatively speaking) and you could get one self-pay. The fact that they don't give us Dexa at our last period is particularly outrageous when you hear that it's not a terribly expensive test. I felt I was too young for osteo meds since they can only be taken for a few years, not sure what I was going to do in say 10 years if my numbers decreased substantially. I don't know if you can access this site but I check them regularly since supplements aren't regulated and random people on the internet will recommend all kinds of things, https://www.consumerlab.com/answers/how-can-i-find-supplements-that-are-gluten-free-on-consumerlabcom/gluten-free-supplements-consumerlab/ Feel free to reach out privately too, there must be a way to do that on here.