Osteoporosis bone density test. Did you get yours? How did you do?
After 18 months on Tymlos, my bone density tests are in. For my age, 78, my scores are in the range and the hips have returned to osteopenia. I held my own but did not achieve statistically significant improvement. Now I must make a decision about my future:
-Stay on Tymlos for 6 more months until I have completed the two-year cycle. As soon as the Tymlos is stopped, the disintegration of my newly built-up bone will begin.
-Begin Prolia right now, which will protect my new bone from being reabsorbed. There is a 10% chance I will have a side effect called osteonecrosis, responsible for jaw pain, along with joint pain. These were the same side effects I had with Boniva, a bisphosphonate. A change was made to Tymlos that performed reasonably well with no side effects.
-Stay on Tymlos for 6 more months and then switch to Prolia. My worry... 2 injections a year... a long half-life....and I haven't seen any solutions if there are side effects.
-Discontinue all medication and adjust my diet as well as supplements to get enough D3 and calcium plus Increase my exercise routine. My small fiber neuropathy.....now progressing as I knew it would, makes exercise a challenge.
What are you doing to mitigate the effects on your bones from osteoporosis? How is that choice working for you? What concerns have you had about your future under your chosen strategy?
Stay in touch on Connect. Share your experiences so we all can learn from each other. You have a lifetime invitation. I am looking forward to hearing from you.
May you be safe and protected from inner and outer harm.
Chris
Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Hi, @kilh You asked @bunky44 but I hope you don't mind if I respond too. I have been on Tymlos since March. Initially, I had some light-headedness the next morning (I take it before going to bed), and I do have some fluid retention in my belly which I understand is not uncommon ("puffy belly") but other than that I have no side effects that would cause me to discontinue it so far.
What type of side effects caused you to stop using it?
JK
Side effects I had were several nights my BP was 205/189 and chest pains. During the day was fatigued and did not get much done. And then there would a few nights everything was fine. Also found out not to give the injection where a little capillary is. That caused me more pain. And we live on the farm and things have to be done and you can not skip chores. Then I wondered if I could go another 20 months of not knowing what side effects will come next. My lab work was great except for the high BP and my pulse(105). But reading every comment on the different drugs and their experience are they any better for me? Tymlos is supposed to be such a good bone builder. I have been through Fosamax and Reclast with no problem but I was younger then. So where do I go now is the question. Thanks for the reply. Be healthy and safe. KLH
Reply to @contentandwell my side effects are in the text above. I hope you can find it. I truly would love your opinion and anyone else who would like to chime in. I need to make a decision. Besides that, I am approved by Radius for the full 18 months free sent to my home. I hate to miss out on that. Somewhere I read they gave their injection and then did their exercise routine and bypassed any heart problems. Then went to bed. Someone else was only taking 1/2 dose every other day. I wonder how that works. Anyone with suggestions to try is welcome. I really would like to continue with the Tymlos if at all possible without any real heart damage. Thanks to all for caring and stay healthy. KLH
I wonder if there is anyone else that takes the supplement vitamin K-2 (Menaquinone 7/?) Most women in my family are eventually diagnosed with Osteoporosis. I take the usual Calcium supplements, Vitamin D, and also the vitamin K-2. Vitamin K-2 is fairly popular in Asian countries, and has shown some benefit in preventing bone loss. ( I do ask everyone's pardon that I don't cite proper research. It's late tonight and I'm feeling a bit lazy...) I recently had my first Dexa bone density scan and I was classified in the "Osteopenia" group. I do plan to increase my protein intake, thanks to the many suggestions on this forum. I also have a little set of bar bells, 5 pounds each, that I lift to maintain my upper arm strength. If I didn't have spinal stenosis, I would be doing a lot more exercise in general. Weight-bearing exercises are so good for strengthening bone. As the muscles increase....so do the bones. There is plenty of research to support this statement. (But again, it is late, and I'm drifting off to sleep.) Happy dreams to all!
Hello~
Sounds like you are doing very well in what your regimen is for your conditions. Seems like it's a new approach (duh) regarding the correlation between protein intake , calcium, exercise, etc. I bet most postmenopausal women who end up with weakening bones have not kept up the right amounts to maintain strong bones for the long run. I also didn't realize that those of us who choose to take the different bone building RX's have to change them, regularly..and once off of those meds..that the decline in bone density diminishes pretty fast....that's a bit of troubling news, must say.
I've been doing more weight bearing exercises...wearing a weighted vest makes a big difference when I use my rebounder. Also ankle weights...as well as doing free weights and walking when 'air' permits.
Adding in more protein as well as doing collagen has been helping me to feel better about all I am doing. Most women don't get enough protein in their daily diets and could be adding to their bone loss..even though they do all the other 'right' things. Find out what the right amount is using your own BM index....don't want to throw off your other body functions by loading up on too much of anything really...balance is everything. Find the best bone building nutrients as well..there are many out there now that have put together some great products that synergistically can benefit us. It's a marathon..not a sprint...plan your new lives around this...and prosper...in good health and peace of mind.
@kilh I have heard of people building up to a full dose by only doing a half dose initially. That's something you would need to check with the doctor who has prescribed Tymlos. I think that may be your best plan of action.
I never had BP or heart rate problems from it. My heart rate was slightly elevated, as in the 70s vs 60s where it usually is but that was not a problem and it quickly came back down again.
@bunky44 I agree, most women don't get nearly the suggested amount of protein. When I discovered that was important I started tracking mine. I thought I ate a lot of protein but it turned out I was well below the recommended amount. I now am very conscious of it and track both protein and calcium with myfitnesspal, along with other nutrients that I have to be conscious of like sodium.
JK
I was told by my nutritionist that calcium should be taken with vitamin k I think you are in to something
Hi @echolsleslie, Here is a link to a scientific article about nutrients essential for bone health:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3330619/
I hope you can access it through the link. If not, google the title,
Essential Nutrients for Bone Health and a Review of their Availability in the Average North American Diet
Charles T Price,* Joshua R Langford, and Frank A Liporace
I take alendronate once a week in addition to Calcium, Magnesium, Vitamin D, K1, and L. Reuteri. I will be adding boron, and after reading this article, probably silica. I also do strength training exercises for osteoporosis three times a week (Carol Michaels is the instructor - she's on Youtube), walk about three hours a week, and started Whole Body Vibration Therapy to try and build back bone density. I am on prednisone for an autoimmune disorder. Before I got the autoimmune disorder about 18 months ago, I was very active, even doing Judo, so was shocked when I learned I had osteoporosis, but it runs in my family. Good luck to you!
I do take a supplement that is Silica. Quite expensive, but states that it helps maintaining collagen in skin, hair, and nails. I can say that my nails do grow so very quickly when I take the Silica supplement. It's expensive, and not in my usual armamentarium of Calcium, Vitamin D, Vitamin K2, etc. When I do start taking it again, the results come quickly. I notice because I'm a pianist and I really can't play with long nails. I keep my nails quite short, and I have noticed that I have to cut them much more often when I take this supplement.
Bone, teeth, nails, and skin, Who would have thought that they are so interrelated. But they are!