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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
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Wow that sounds like a perfect idea. I'll keep an eye out for it. Thank you!!!
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2 ReactionsWe live in Tucson and in my queries so far no one here offers a Trabecular Bone Score (TBS) with their DEXA scans and I would like to have one. My endocrinologist messaged that Mayo Clinic in Phoenix *may* offer TBS but I contacted the general information number at the Phoenix Mayo and searched the website yet still cannot tell whether it's an option. Does anyone know whether the Mayo Clinic in Phoenix offers TBS? Thanks!
My T-score is T-5.3.
@kilh knows this- we originally started Tymlos together_ but since I have frequently written about starting Tymlos with two clicks, I just want to make sure to say that is not an effective dose, but just a way to start the process of moving up to an effective dose 🙂
My doc was happy when I got to 6 clicks. Then for many months I did 7. For the last 6 weeks I am doing the full 8 clicks and will try to do that until April 1 when my 18 months is over. I get side effects at 8 clicks and am very tired all day. At 6 or 7, after ramping up, I had almost no side effects.
@kilh good luck!
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1 ReactionI'm copying this from another post chain to reach as many of you as possible, so forgive the repeat if you saw that one too:
So I had a very disappointing but not surprising appointment with an endocrinologist. I was referred to Ruth Horowitz, but she is no longer taking new patients so I got another doctor. I took all my test results and copious notes from Keith McCormick's book with me. I had been very impressed with Dr. Horowitz when she spoke at a webinar conference recently on osteoporosis and felt that she was pretty up to date with the latest findings. Unfortunately, the doctor I saw didn't appear to be up to date. While she was nice enough, she was rather dismissive of most of the tests recommended by McCormick and didn't even know what an Echo Light Scan was. She said she would advise a bisphosphonate, but didn't even mention HRT, which according to a talk I just saw on this issue, is probably the right choice for me at 55. Here's a link to this if anyone is interested.
https://gbmc.webex.com/recordingservice/sites/gbmc/recording/e6111214853f103bbf7e005056811e38/playback
I was hoping to get another DXA scan with the vertebral fracture assessments and TBS score, but again she says I don't even need another one until September (which would be a year from my last one). So, I am due to see my gynecologist within the next month and will ask about low dose transdermal HRT to start, with the idea of ramping up to the standard dose if I don't have too many side effects from it (I tend to be extremely sensitive to any new drug, so I start slow and low). I also have a yearly physical scheduled with my PCP in early April and will ask if he will order the tests McCormick recommends whether or not they are covered by insurance. Lastly, my husband recently went to have extensive allergy testing done due to constant post nasal drip, which I also suffer from, and he says they tested for all kinds of things including foods, etc., and insurance paid for it. So, I am going to make an appointment with them and see if I can get tested for gluten sensitivity, lactose intolerance, etc.
Once I have all the results from everything that insurance will pay for, I then plan on making copies of everything and sending them to Dr. McCormick as instructed on his website, for his assessment and pay out of pocket $350 for his recommendations as to what additional tests I should still get. I am willing to pay out of pocket if necessary but figure I can try all these various routes and still have much more complete information by the end of April or May of this year. I'd welcome any and all thoughts on my plan and will update on this site as time goes by.
For now, I am not on any bone medications. I have upgraded most of my supplements to the Wellena brand, which I hope will be of even higher quality than what I've been taking, which is Vitamin Shoppe. Again, I am willing to pay for supplements that are really helping me, but they are expensive, and it would be nice to have someone to consult with who can tell me exactly how much of a given thing I need to take and in what form. Most doctors provide little to any guidance on this.
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2 ReactionsI met with Dr. McCormick and then, as he suggested, asked my PCP for the various bone turnover tests. I have to say, they have not been terribly helpful. My excellent endo doesn't do them either. I do get me D3 checked periodically.
If this doc suggested bisphosphonates, does that mean your bone density isn't too bad? If you have osteopenia or very mild osteoporosis, McCormick's book is great. But for people like me, McCormick suggested stronger anabolics.
Yes. My scores are not bad. In fact the Echolight Scan showed my one hip to be in the green and the other to only be osteopenia and the lumbar scores were still osteoporosis but not as bad as the Dexa. I think trying HRT for awhile may be a good thing at this stage with the idea that I can pull out the big guns like bisphosphonates or bone building drugs if my scores continue to go down too fast. Right now I am in the most precipitous bone density drop period being about 18 months past my last period, so to me, it seems prudent to keep a really close eye on how fast things are progressing. According to the Dexa, I went from osteopenia in July 2020 to osteoporosis in August 2022. I had the Echolight Scan done in Oct, 2022, and, as I said, it showed things to be better than the Dexa indicated.
What were your dexa scores...
As of 9/2022:
AP Spine L1-L4 BMD=0.850g/cm2, T-score = -2.8
Left Femur Neck BMD = 0.745g/cm2, T-score = -2.1
Left Femur Total BMD = 0.771g/cm2, T-score = -1.9
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1 ReactionI had a cancer that was fed by hormones. HRT makes me nervous for anyone! One in 8 women gets breast cancer and 70% of those are fed by hormones. If you are just past menopause maybe it is safer. I don't know!
Those scores don't seem too bad. Be careful with your spine! -2.8 is -.3 over the line but still mild- but it still makes sense to take care!