Struggling with making an osteoporosis treatment decision

Hi expresso409 - thank you for the tip. I did some research into AlgaeCal; found their website but not much outside of it. Is there a site where the general user public shares their experiences? Thanks again!

I think you are right to be concerned and shouldn't let yourself be backed into a corner. I am 70, just diagnosed with osteoporosis, with a T-score of -3.1. It was kind of shocking because I've walked at least 5 hours a week for the last 25 years, done strength training on a regular basis, until the last year when I got really sick (but managed to keep walking through it). I also was just diagnosed with an autoimmune disorder that requires me to be on prednisone, a bone thinning drug. It will be long term. I have a rheumatologist I trust and a close friend who is an excellent doctor. The rheumatologist prescribed Alendronate and my friend supported that. It has been around for years. My mom took it (as Fosamax). She had bad osteoporosis - with the dowager's hump. She did not get additional fractures. My aunt, who took no drugs, died from spinal fractures. The Alendronate is a once a week dose. I'm going to try to build my bones back better so keep walking and do targeted exercises for the osteoporosis and try to get off the drug. They know enough about it now, that after 5 years on it, a drug holiday is taken. Carol Michaels is a PT and an expert on Osteoporosis. She has videos on You Tube - safe strength and stretching exercises for osteoporosis - with no forward flexion of the spine. By the way, I am not a paid consultant for Alendronate! Wishing you the best.

@tsc I, too, got osteoporosis from taking prednisone for an autoimmune disease. And I’ve been taking alendronate, but my T-scores got worse. I started out with high doses of steroids and have been on 10mg for about 8 months. Ive added in mycofenilate mofetile (CellCept) in hopes of replacing the steroids. Been on steroids for about 3 1/2 years.
You sound like you’ve been doing everything right! It sure is a bummer when you do what’s right but it all goes wrong anyway. It also sounds like you have a family history of osteoporosis.
Have the steroids at least helped your autoimmune disease?

Hi Becky - I've taken a couple of Pilates classes by accident, hanging around after an aerobic class to see what it was like. It looks easy but it's a workout! I haven't been back since before covid...

Well, reality hits. I heard from my doctor shortly after I posted. She said my osteoporosis is actually worse and wants me to see a new endocrinologist. Dang, dang, DANG! Back to square one!

Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such an evil condition, there don't seem to be any really great ways to deal with it. I sure hope that taking Tymlos will help me but I dread what I will need to be on afterward.

Good info, @tsc I used to do Pilates reformer at my health club but due to Covid I still have not returned there. I was thinking about it but the Delta variant struck so I will put it off longer -- 10 fully vaccinated people in my state, NH, have died from Covid and being on immunosuppressants my antibodies are low. I believe all of those 10 were over 60 years old.

I do a lot of exercise to Youtube videos so I will check out Carol Michaels. The person I use most, Jenny McClendon (https://www.youtube.com/channel/UCHufaoaq1VqjHvnv8zvg9pQ), is/was a physical therapist also so she is pretty knowledgeable about what is not good for osteoporosis but I think she just avoids those exercises knowing that since she caters to seniors many people probably do have osteoporosis.
JK

Carol Michaels is also a Physical Therapist. I'll check out Jenny McClendon. Thanks!

I'm going to jump into this discussion as I've been doing Pilates for more than 25 years. I purchased a number of DVDs so I could do it at home and also went to a weekly mat class in town. It stopped with COVID. At the same time we were in shutdown, I was overtaken with symptoms of PMR, an autoimmune disorder, which made all movement painful. Mat work wasn't possible. I managed a daily walk, though. Long story short, a year later, I've been diagnosed, gotten treatment - steroids - no more pain. Just diagnosed with osteoporosis though. In researching exercises for osteoporosis, I was surprised to learn that many of the Pilates exercises that involve SPINAL FLEXION can cause compression fractures of the spine. Lifting the head off the mat, abdominal curls, c curves, rolling like a ball, the saw, the hundreds, the helicopter, etc. with the head off the floor - are all dangerous. Carol Michaels is on YouTube and has excellent workout videos for persons with osteoporosis. I also found the attached folders at the National Osteoporosis Foundation website. I included yoga since so many Pilates exercises are similar. It's good for us to exercise, but we have to be aware that the wrong movements can cause us harm. All the Best and keep moving! tsc

Thank you for the helpful comments! I’m planning to have a long conversation before i actually start. Ill also look up Carol Michaels. Thank you!

Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such an evil condition, there don't seem to be any really great ways to deal with it. I sure hope that taking Tymlos will help me but I dread what I will need to be on afterward.

Good info, @tsc I used to do Pilates reformer at my health club but due to Covid I still have not returned there. I was thinking about it but the Delta variant struck so I will put it off longer -- 10 fully vaccinated people in my state, NH, have died from Covid and being on immunosuppressants my antibodies are low. I believe all of those 10 were over 60 years old.

I do a lot of exercise to Youtube videos so I will check out Carol Michaels. The person I use most, Jenny McClendon (https://www.youtube.com/channel/UCHufaoaq1VqjHvnv8zvg9pQ), is/was a physical therapist also so she is pretty knowledgeable about what is not good for osteoporosis but I think she just avoids those exercises knowing that since she caters to seniors many people probably do have osteoporosis.
JK