I've had osteoporosis for more than 5 years. As far as I know only one vertebral compression fracture from fainting onto a concrete floor. I have had four aclasta infusions in total. My GP is keen on Prolia but I am not.
So not sure where to go from here.
unfortunately I cannot provide you with any information since I am finishing up my 5th yr on Alendronate and I am researching options for where to go from there. My rheumatologist is also big on Prolia, but I have other health reasons why I am looking into alternatives..
Hi
This is my experience with osteoporosis so far.
I was diagnosed at the age of 59, now 68. I was perfectly healthy, ate well, exercised 2.5 hr daily, no alcohol, no smoking, etc., no family history of OP. Been tested for secondary reasons for OP, & so far the only explanation is low BMI most of my life & little to no exercise in my teenage yrs.
I didn’t treat with meds for my first, but the following yr my DEXA & labs showed worsening BMD.
I took Forteo with great results, Lumbar went from -3.4 to -1.6 and Femur from -4.0 to -3.0. Then on Prolia for 5 yrs. Post Prolia Lumbar was -2.1 and Femur -2.9. I then took Evenity for 1 yr, Post Evenity Lumbar -1.4 & Femur -2.8.
In Sept 2024, I had my 1st Reclast infusion which my Endo says, I would take for 2-3 yrs, then take drug holiday, but this disease has no cure, so I’m thinking that I will need treatment forever.
I get an annual DEXA & labs every 3-6 months.
Keep in mind we all respond differently to treatment and have different causes for Osteoporosis, but I hope this helps.
Best wishes & take care
Thank you very much for this post. It's rare that we get to see a concise history of someone's experience over time with the drug's they took and the bone density outcomes over the years. This is extremely helpful to me as I'm just two years into Prolia and trying to envision the next 10 years (81 year old male here).
Welcome! I plan to add more to the graph, like med side effects, lab results.
If you are on Prolia, it’s important to know about the rebound effect when you go off Prolia. Luckily I never experienced multiple spine vertebrae fractures.
Read this: pmc.ncbi.nlm.nih.gov/articl....
Thanks for this. Yes, I studied treatments off and on for months before deciding on Prolia and learned about the unfortunate rebound effect. I decided on Prolia because we still wanted to do a lot of traveling and it's the most convenient of all the choices. I understand I'll have to be on something the rest of my life, and that's fine with me for the freedom and peace of mind I receive in return. Three years ago I suffered a severe L-1 compression fracture and was hospitalized after surgery. That was a difficult time, and took me months to recover. Thanks to Prolia, I am now very fit and active and life is good. Sorry to see in the chart that you had a hip fracture a couple of years ago. Hope you're fully recovered.
i find this podcast fabulous for understanding the possiblity of different highly educated points of view. This episode with Dr. Bush being interviewed was most helpful to me. I didn't know until I turned 50 that i was celiac. I never developed full bone density. I am also a small woman, and DEXA's not accurate for us. Plus i learned in this podcast the limits and distortions of BMD DEXA tests and even REMS. We need perspective. Learning more helps you decide what can be best for you. debirobinson.com/stronger-b... I am now 69. I feel strong and haven't had fracture since I was in my 30's. That was of my ankle and it was severe but still MD's did not suspect celiac though they should have and might have if it happened today. I changed my lifestyle and habits. I was osteopenic at 45 on my first DEXA but still no one knew why, but at 50 because of NIH recommened tTG testing, it was clear about my celiac. Only that test revealed it. I now am -2.6 having crossed at 69 into osteoporosis. I am 5'2 inches tall 115 lbs. I have not yet done REMS. exercise daily. I have started POWER PLATE and find it delightful and deep learning curve with movements and working my balance. I have been a pilates instructor for 20 + years now. I did YOGA since I was 16 years old (with some off and on) I love learning about my body and nutrition needs. It has not been easy. All the years undiagnosed Celiac, lead to eating disorder for over 20 years which stopped when I uderstood what foods were giving me so much trouble. Amazing. I don't know what will be my death or aging difficulties, but so far I am on no meds, and take clear action on what arrises. We are all different. Dr. Keith McCORMICK's books (on amazon and other places) help educate us so we can even lead our doctors that are "stuck" in once paradigm. We must find what is right for us, as they are a resource, but not good at each of our uniqueness. I feel so lucky to have taken this initiative out of necessity and a kind of desperation almost 20 years ago and even earlier.
An alternative to the DEXA test, the Echolight REMS test
Diagnosed with osteoporosis.
Cat scan vs DEXA scan
Strontium citrate results in regaining bone
