Younger than usual with severe osteoporosis

Hi @hopefullibrarian. I wanted to say a few things yesterday, and oops, it all got wiped out😳! I gave up for the evening. Please read the threads in here on osteoporosis. Don't just go by the headings bc there are nuggets in every conversation that are useful. Drs, insurance companies, even pharmacies will try and dictate what's best for your young life. They do not always get it right. Yet there are some in the medical field, that have invested their heart & soul into learning abt this disease, and might just take a different approach to Prolia at such a young age. I would recommend Dr Keith McCormick's new book, "Great Bones." Be sure to go right to his chapter on medications, it's not too late. He talks abt sequential therapy as one of the most important things. Also, specific testing is very important before, during, and after.

My experience was similar to yours with my long awaited physician. I was handed a list of meds, told to read abt them, increase calcium, exercise, and see you next year! Very difficult to get best care on this disease. It' s way to important to not discuss the short- and long-term objectives of suggested treatments. Dr McCormick is well aware insurance companies will deny you an anabolic first, he says, "fight for what's best for YOU!"

Just passing on a little of what I've learned and Wishing you the Best.❤️

I'm in my 70's, osteopenia and osteoporosis diagnosed a few years ago. And I too am short and petite! I choose not to use the drugs and instead have used Algaecal (not with Strontium) as it is calcium that comes from a food source, vitamin D3, Ultra K2-7 + D3, Living Bone and Bone & Marrow - 2 supplements from Ancestral Supplements, use ankle weights for some exercises, walk, play tennis and stand as much as I can instead of sitting. My last Dexa in 12/23 showed no significant increases - I stayed were I was a year ago and I consider that a win. I will continue with what I'm doing until I have another Dexa. At this point with all my supplements there is no way of knowing which is helping and which isn't worth it. So it's costly but at this point, my goal is stay active.
Best to all of you!

Hi @elisabeth007, My prior auth that was denied was submitted by my Orthopedic surgeon at a rural clinic. Now I'm also consulting an Endocrinologist at a huge university clinic. She told me not to worry if my treatment gets denied on the first try, because all she would need to do is call them and sort it out.

Hi @rola, I've been wanting to circle back here and thank you for this comment that you made to my first post. It was the day after I joined this support group, and it opened my eyes and gave me true hope at a time when I was desperate to find some. Thank you!

Sorry to meet because of osteoporosis! But here we go. Maybe we can help each other. I'm 58 and got extreme pain in my pelvis while carrying some groceries. It turned out to be insufficiency fractures in my sacrum, plus a transverse fracture in my sacrum. It has healed now but the question was “why”? My GP ordered a DEXA scan and I was shocked to learn that my spinal T-score is -4.0 (hip not so bad, at -2.4). I have a very active life and a mostly-healthy diet that includes plenty of calcium. Like you, I’m trying to navigate the implications for my life. All of the clinical guidelines that I can find say medication is recommended, though there are serious and unserious side effects to many of them, and I wonder about long-term implications for those of us who could potentially be taking meds for 30”+ years!
I have done a lot of sports over my lifetime including running, hiking, biking, cross country skiing, and mountain biking. I want to continue my favourite ones (mountain biking and cross country skiing) but I now I’m afraid of fracturing if I fall.
I have started spine stability exercises that will help me hold my spine in neutral (which reduces the stress on the vertebrae and thus makes them more resistant to fracture).
I know that weight bearing and impact are important for maintaining the bone density that we have left. But!!! - I am not sure how much weight bearing my body can handle without fracturing.
I am learning as I go and look forward to exchanging information with you and with others on the forum.

You sound a lot like me. Super active my entire life and I ended up with the same scores as you at 40 years old. Since I was already doing all the right things already to prevent osteoporosis, the best option for me was using medication. I couldn’t imagine having to live another 40-50 years being so careful to not fracture something and restrict myself from doing the activities and exercises I love. I’ll gladly take medication for that long, if needed, if it allows me to live the life I want - side effects or not. That’s my take on it but everyone is different in their comfort level of taking medications.

I'm sharing this information in case it can help anyone. Wish I had known all of this 10 years ago.

This month I was just diagnosed with osteoporosis. DEXA showed -2.8 and _2.9 on left and right hip, respectively. Am in mid 60s

I do have one question. I have Premarin available to me so I have started using a dose of one gram 3 times a week. I did see something about that which made me think it could work for my situation, though others may have a different reason not to go that route. My question is what is everyone's experience with Premarin as far as bone density/osteoporosis and did you have an estrogen and progesterone mix instead of just one hormone like me?

And as far as medication, right now I am trying to find a dr who understands and works with Tymlos and who how to manage patients on it.

I'm also working on figuring out a good femur neck bone building exercise, but blew one knee last week doing deadlifts. I thought I was starting with weight that was comfortable for me - two 8 pound dumbbells. I had good form/straight back/slowly moving through the lift/8 reps x3, but one knee really acted up the day after. It's better after a week. So I am going to try a 10 pound waist weight and walk 30 minutes a day. I may wear the waist weight throughout the day though while doing yard and house work.

I am also doing 3 sets of 20 reps of knee banded hip abduction and glut donkey kick machine at the gym.

But about supplements: If this can help anybody....

Some of you may know about vitamin K2 being important. I have done some research about how it's involved in bone building. The simple explanation is that vitamin K2 directs calcium out of the bloodstream and to the bone.

A very good article about vitamin K2 - https://www.healthline.com/nutrition/vitamin-k2#bone-health

And from another article, quote, "Vitamin D & vitamin K2 are complimentary vitamins. While Vitamin D is necessary for absorbing calcium from food in the intestines, Vitamin K2 does two functions that help direct the calcium to the correct spot:
1) by activating Osteocalcin, a protein that promotes accumulation of calcium in bones and teeth, and
2)by decreasing accumulation of calcium in soft tissues, such as kidneys and blood vessels

Vitamin K2 is found in beef liver, egg yolk, soft cheese and fermented foods."
Source: https://www.hyperparathyroidmd.com/hyperparathyroidism-vitamin-d/

I get K2 from supplements and natto too. Natto is a fermented soybean product found in some Asian food stores.

I freeze my natto since I use only 2 teaspoons daily and don't want it to spoil. I also take the brand Nature Made D3 with Vitamin K2 daily and aim for 100-300 micrograms of Vitamin K2 daily. The supplement has 100mcg.

I take my vitamin D3, calcium, zinc, magnesium combo pill, four pills dosed throughout the day. I take the first pill with the vitamin K2 supplement and the third pill with 2 teaspoons of natto.

Sorry to meet because of osteoporosis! But here we go. Maybe we can help each other. I'm 58 and got extreme pain in my pelvis while carrying some groceries. It turned out to be insufficiency fractures in my sacrum, plus a transverse fracture in my sacrum. It has healed now but the question was “why”? My GP ordered a DEXA scan and I was shocked to learn that my spinal T-score is -4.0 (hip not so bad, at -2.4). I have a very active life and a mostly-healthy diet that includes plenty of calcium. Like you, I’m trying to navigate the implications for my life. All of the clinical guidelines that I can find say medication is recommended, though there are serious and unserious side effects to many of them, and I wonder about long-term implications for those of us who could potentially be taking meds for 30”+ years!
I have done a lot of sports over my lifetime including running, hiking, biking, cross country skiing, and mountain biking. I want to continue my favourite ones (mountain biking and cross country skiing) but I now I’m afraid of fracturing if I fall.
I have started spine stability exercises that will help me hold my spine in neutral (which reduces the stress on the vertebrae and thus makes them more resistant to fracture).
I know that weight bearing and impact are important for maintaining the bone density that we have left. But!!! - I am not sure how much weight bearing my body can handle without fracturing.
I am learning as I go and look forward to exchanging information with you and with others on the forum.