Struggling with making an osteoporosis treatment decision

Cecilia... thanks for the info. How long have you been on Evenity? What were your T scores? Appreciate your insight.

Cecilia... one other question. Are you aware of the Yale Bone Center (Endocrinology & Metabolism)? I was wondering if they were any good? Looks like several are academics.
https://medicine.yale.edu/intmed/endocrin/programs/bonecenter/

No, I didn't know about the Yale group. I just followed my primary doctor's suggestion. If this group treats osteoporosis, they should be great.

I'm sorry, I didn't finish your questions. My bone density for the 18 years I had taken the tests were -3.7 in my back and -3.6 in my hips with a minimal improvement in my hips over those 18 years. After 12 months of Evenity, starting in June 2021 and ending in May, 2022, I went to -2.6 in both areas.
I will be checking back in with my enterology group in May, for my one-year follow-up. I'm assuming they will be having me take another bone density test to see if the scores hold. I have been on Risidrenate (generic of Actonel) as a follow-up to the Evenity. Karen Moriarty had wanted me to go on an infusion med last May to continue after Evenity, but I refused because it seems too much like a chemo procedure. I had taken a six-month Prolia dose during my treatment years with my primary, and it was the only medicine I had a reaction to...a very strong aftertaste which made all food tastes unpleasant. It took me six years to finally taste normally again. That's not a dire side effect, but I dislike Prolia for that reason and am suspicious of anything that is taken in massive dosages. On Evenity, I did have itching in my legs during month 8, but it wasn't a big deal, and disappeared after a couple of weeks. All I know is that Evenity in monthly doses worked for me.

@yani2023 there are several medications that are possible, depending on how significant your bone loss is. Did you see an endocrinologist?

With the added complication of immune suppressants after kidney transplant, I would try to see an endocrinologist - maybe in the same hospital system that you had your kidney transplant.

I am seeing a doctor in the Yale Bone Center group. Dr. Bergwitz is very thorough. I've been on Tymlos for almost 5 months and just stopped because of the side effect. We think they may be caused by Tymlos since others have reported the same. Bouts of extreme fatigue, loss of appetite and weight loss. He immediately ordered labs to make sure I wasn't leaching calcium.
I'm looking at alternative therapies including a Bone Fit certified PT pro. None in Fairfield, but one in Stamford and others further north and east.

I am in similar situation. -3.4 in spine. I exercise, eat right, teach yoga and aerobics classes. I will not go on Evenity. Meeting with some other doctors to discuss options

Thinwhitewoman, I love your call name! I also live in CT and am struggling to find the right doctor to help me. My PCP has referred me to an endocrinologist, however, my appt is August! I wonder if the Yale Bone Center is backlogged also.

Do you find the Yale Bone Center group beneficial? How did they determine to put you on Tymlos? Did they do bone biomarker tests prior to putting you on meds? May I ask your T scores?

Since you've stopped Tymlos are you stopping osteo meds altogether? Who is a Bone Fit certified PT... a physical therapist?

So glad you got the joke. When I was first diagnosed, I asked why and they said "because you're a thin white woman." I'm still looking for them to find the cause because that will lead to a real solution.
I denied meds for 5 years and my internist almost fired me as a patient. She was very scared that I'd have a hip fracture. I don't blame her for being concerned. Aren't we all?
So I have walked in your shoes. I was referred to Yale when the internist I was going to said that I had to take a water pill in order to take Tymlos and something in me said "full stop." Not another drug. I think it took 3-6 months to get an appointment with him. So Dr. Bergwitz was very patient with me. I don't think they're used to patients doing their own research and pushing back. Once he understood why I didn't want to take yet another drug, he ordered another battery of labs ($$$) and said I didn't need the water pill. I was leaching calcium because I was taking too much. After he halved my daily supplements, my labs were normal. Vindicated!
Arriving at Tymlos was not easy. I felt it was the least worst as he said the black label warning about osteosarcoma was coming off. I felt it had been on the market long enough to ID any big, bad side effects and prove it was effective. My issue is mostly the spine and that's where Tymlos is supposed to be really good at adding bone mass. I have only had DEXA scans and they continue to worsen. I'm sorry I had to stop and am still uncertain as to why I'm feeling so fatigued and suffer loss of appetite. Some on here have reported those side effects and they are listed on the Mayo site too. Hopefully my internist has some ideas and can run some tests on Wed. If we don't find anything else that looks like it's causing my symptoms, I'm going to turn back into that bad patient that refuses meds. I will not do nothing because I know this is serious.
My sister went to a Kripalu workshop on non-prescription medication solutions to OP and one of them was specific exercises and stretches as taught by a Bone Fit certified physical therapist. I wonder if anyone on here has been? My sister also recommended I walk with a weighted vest since weighted movement is supposed to help build bone. Supplements are also recommended, but we really need to do our our research to know what's right for our bodies given other meds and supplements we're taking. Hope this helps.

@thinwhitewoman I restarted Tymlos at two clicks and moved up. I remained on 6 clicks out of 8 on the pen for quite a long time, then 7 clicks and only for the last two months have done the full 8. The full 8 is giving me fatigue, dizziness and I think migraines are worse. Below 8, I have no side effects at all. It's weird that that one click makes a difference.

Have you tried a lower dose? My doc was okay with 6 clicks and delighted with 7. I ramped up over a couple of months. I was really determined to take it. I have a lot of fractures!