Advice about Osteoporosis treatment

Posted by deborahla @deborahla, 2 days ago

I am new to this group. My last T score was -3.8. I am 71 yo, healthy otherwise. No meds except Oscal and a multivitamin. No cardiac hx though I have this in my family. I have never had treatment other than 1-2 years of fosamax at age 53. I saw a rheumatology doctor today who recommended the following:
1. Evenity injection once mo x 1 yr followed by Prolia FOR LIFE.
2. Tymlos injection daily x 2 yr followed by Prolia FOR LIFE.

I did ask him if there were any other treatments. He said "no".

I am not thrilled about either treatment and know very little about the drugs (He gave me a pharm rep handout which I feel is slanted).
I also do not want to go on Prolia the rest of my life. It seems from reading this has risks. I do have a hx of periodontal disease and that worries me.
I would like to treat this if there were some way to take the Evenity without going on Prolia the rest of my life. Evenity would be my choice due to the dosing and only 1 year.
Does anyone on this forum have any advice so I can make a decision.
I have also thought about doing "nothing" now and waiting to see if better meds come down the pike.
Thank you

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hi deborahla, in your situation I would take Tymlos for two years and skip the Prolia. Evenity is easier (provided you don't have adverse reactions) but Tymlos creates the strongest most integrated bone. Prolia is tricky because you may not be able to take it for the rest of your life. There is the risk of osteonecrosis of the jaw, and the risk of atypical femur fracture. There isn't a good way of stopping Prolia I think it best to start with a medication that remodels bone (Tymlos or Forteo) and follow with an antiresorptive, Is the lowest score in the spine or in the hips.

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I'd see another doctor, preferably an endocrinologist who is part of a hospital that specifically treats osteoporosis. To tell a patient that the only option is to take Evenity/Tymlos followed by a lifetime of Prolia tells me this doctor is not the right person.

OP: two years on Tymlos could get your score down to -2.something, at which point there are options other than Prolia. One of our posters likes to direct people to a video by this doctor re: strategies for medication:

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@njx58

I'd see another doctor, preferably an endocrinologist who is part of a hospital that specifically treats osteoporosis. To tell a patient that the only option is to take Evenity/Tymlos followed by a lifetime of Prolia tells me this doctor is not the right person.

OP: two years on Tymlos could get your score down to -2.something, at which point there are options other than Prolia. One of our posters likes to direct people to a video by this doctor re: strategies for medication:

Jump to this post

The video just posted is by Dr. Ben Leder, a researcher and endocrinologist at Mass. General in Boston. I really like Dr. Ben Leder's video on "Combination and Sequencing Approaches to Osteoporosis" also on YouTube.

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@gently

hi deborahla, in your situation I would take Tymlos for two years and skip the Prolia. Evenity is easier (provided you don't have adverse reactions) but Tymlos creates the strongest most integrated bone. Prolia is tricky because you may not be able to take it for the rest of your life. There is the risk of osteonecrosis of the jaw, and the risk of atypical femur fracture. There isn't a good way of stopping Prolia I think it best to start with a medication that remodels bone (Tymlos or Forteo) and follow with an antiresorptive, Is the lowest score in the spine or in the hips.

Jump to this post

Thank you to all who commented.
To @gently, My Lumbar spine T score is -3.8. The T score of the left femur was -3.8 and right femur -3.5.

To @njx58: I live in Nashville, TN and Vanderbilt is the teaching hospital and the one with best reputation. For some reason osteoporosis is treated by a Rheumatology doctor there instead of Endocrinology (my Doctor was a Vanderbilt physician). Thank you for the link. I have watched Dr. Leder and it was helpful.

To@windyshores: Thank you for the link. I have watched it and it is excellent. I am going to do further research but will appreciate any further suggestions on this forum and will ask more specific questions as I come up with them.

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The You Tube posted was full of valuable information. I had adverse reaction to Fosamax, was referred by my Internist to a Rheumatologist that started me on Prolia. I had to take a brief “holiday” recently due to dental implant. Unfortunately, the day I was scheduled to start back on my Prolia injection (I’m on year 5) I was diagnosed with an l-1 compressed fracture.
Very painful but 3 weeks later I am well. I start PT this week.
I am anxious to talk with my Rheumatologist about Prolia, continuing or changing. Trying to think of a delicate way to suggest she watch this YouTube. If anyone in this group is living in Houston I’d appreciate any information regarding doctors and or treatment.
Wishing all good luck!

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That is the video I have mentioned a few times. "Combined and Sequential Approaches to Osteoporosis." I always get the title a little wrong!

Another resource is the 700 page book "Great Bones" by Keith McCormick, a chiropractor expert on osteoporosis. It can be used as reference or relevant sections can be read as you go.

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@windyshores


That is the video I have mentioned a few times. "Combined and Sequential Approaches to Osteoporosis." I always get the title a little wrong!

Another resource is the 700 page book "Great Bones" by Keith McCormick, a chiropractor expert on osteoporosis. It can be used as reference or relevant sections can be read as you go.

Jump to this post

Thank you so much for this, Deborah

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Hmm. Thank you for sharing

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