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Tymlos and feet/cortical bone
I have been on Tymlos for 14 months which included about 2.5 months of ramping up the dose. I’m able to take the full dose. I started Tymlos because my endocrinologist at Stanford and her team agreed that multiple stress fractures in right foot were bone health related. I was osteopenic but my risk score was high because of fractures and steroid use in my life. Since being on Tymlos I’ve gained weight and have a lot of knee and hip pain. Who knows if it’s related because I have biomechanical issues due to fusion of big toe (never do it if you are active!). I am having trouble maintaining my activity level because of these injuries or pain. I do a lot of PT and strengthening.
I just read here that feet bones can improve for a while on Tymlos but then cortical bone strength in feet begins to decrease around 14 months. I’m very concerned about this. I am getting an annual DXA scan which so far has improved. Does anyone know how would I get the cortical bone density measured? They only scan my hip and back. I originally asked for bone scan of feet but was told no. I wouldn’t want to keep taking Tymlos past its effectiveness for feet.
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You are correct; tymlos does help heal foot fractures but after 14-18 moths starts to negatively effect cortical bone ( which is the primary type of bone in the feet); for some peo ple this is a big problem. Forteo even more so than Evenity will effect cortical bone.
Now these are very good drugs - they just need to be understood and monitered well for a specific condition. we are all very different
I had mutilpe bilateral foot fratures ( over 8) and was put on tymlos which helped; until about 14-16 month when it started to actually weaken my feet. W did not at that time understand the negative efffects of tymlos for my cortical bone & feet. Now Dexa does not assess feet. YOu can have a CT scan as baseline and after a year ask an orthopeiditc to measure the' hounsfieldunits' - but I am not sure you will actually learn much. I did this but how I felt in my feet was just as good a gage of how stable the feet were. (There is also quantitive CT - but I have no idea where you get this - or what you might learn to actually help you)
Now that said I was screened for gentic issues and mutiple other issues early on to eliminate possibilities and reslove old imblances..
Get a very good supportive shoe - rocker front if possible to eliminate foot flex. I use Exlero Genesis II. GOod balanaced shoe.
My prpayers you find the support you need. Healing energy to you dear one.
@jessbricht, Some people have a DEXA done on their wrists. in addition to their spine and hip. The wrist is also mostly cortical bone like the feet. Your doctor would have to specify which areas he wanted tested.
@drsuefowler Thank you for this suggestion. Do you know if one wrist scan would in itself provide enough information or would I need to compare a new wrist scan to a future one? Say in 5 months? Not a year as I’m assuming my doctor will suggest.
@dmshope I’m so sorry to hear about your multiple foot fractures. I’ve had two stress fractures and two stress injuries. Problems with feet affect everything. I’m wondering if you might be able to connect me with any research on this I could share with my endocrinologist? How did you learn about this issue, beyond the sensations in your feet? Did your doctor agree it was from Tymlos? My feet are feeling really stable right now at 1 year full dose ( I ramped up.) I don’t want to slide backwards.
@dmshope I was curious about your statement about Tymlos so I did some looking into it.
"In summary, 18 months of ABL administration was associated with significant improvements in 3D-DXA-based vBMD in both cortical and cancellous compartments of the proximal femur. Although TPTD increased cortical thickness and trabecular vBMD to a similar extent as ABL, cortical vBMD remained at baseline levels."
ABL: abaloparatide
TPT: teraparatide
https://pmc.ncbi.nlm.nih.gov/articles/PMC7929959/
Tymlos actually resulted in a positive effect on cortical bone while Forteo was neutral per this study. Of course, this is just one study so if you have a reference that concludes the opposite, please let me know. I like to collect interesting studies on osteoporosis treatment. Thank you!
@jessbricht, one DEXA will give you a t-score which will show how dense your wrist is. This in itself is good information. A second DEXA would show if there is any change. The wrist really should be done at the same time as the spine and hip.