Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@callalloo

This forum really is helpful because there are so many experiences represented. Glad that it's helpful for you. I have osteopenia and devoutly hope to avoid osteoporosis so read the posts here to stay current about which drugs are being used so I can read the peer-reviewed studies about them in case I end up needing to plan ahead. And to read about what others are doing, in addition to drugs, to stop or even reverse osteoporosis.

Jump to this post

Thanks. This is just what I was looking for. So many people have knowledge and experiences we all can use. Not every doctor knows everything about osteoporosis.

REPLY
@artscaping

Good evening @catluvr999. I am back. By the way, are you one of the folks that finds it hard to go back to a previous post........I do. The "Bookmark" feature in your profile really helps. After posting a reply or comment.....just click on the three dots and then on Bookmark. It takes you to your profile so you can find the post without hunting around.

So.....you want my T-scores. I am not an expert on this subject so, please be gentle. I hope this is helpful and would appreciate your feedback. These are all from the same Hologic Discovery densitometry system. The baseline is 10/29/18. The next one is post-Tymlos on 11/18/20. The last scan was 7/9/22.

Hip: -1.5 baseline and -1.2. Bone mineral density has not significantly changed having increased 0.9% since the previous scan.
Wrist: -3.4 baseline and then -3.2. Bone mineral density is increased by 2.6% which is not statistically significant.

Does this tell you anything about my rather rough experience and the medical value of the current weekly pill format as opposed to monthly injections? I call it, "taking less more frequently".

May you have ease and contentment.
Chris

Jump to this post

Hi, @artscaping. Thanks for the tip...I'll try the bookmarking this go-around, if I remember. Seeing your t-score, with those -3s, helped put your meds into context for me, thanks. I don't think my Hologic machine did wrists but maybe it could have if my doctor had requested it. I understand your wanting a higher frequency of lower doses....makes sense. Why do I feel like I've typed this before? I hope this isn't a duplicate reply. The pill you're taking is a Bisphosphonate (anti-resorptive), right? I want to be sure to become aware of the existence of any *non*-bisphosphonate pill form. You could have chosen a daily injection, though, right? That would be lower doses than by doing it less often....but it might be hard to do injections every day.

REPLY
@mj20

Hi everyone, I just joined this group and I think it is wonderful. I just had a dexascan for the first time and my numbers weren't good..... femoral neck, -3.8, total hip -3.7, lumbar spine, -4.7. My doctor wants to put me on Fosamax, but I'm afraid of the side effects. What would you do? I'm in my late 60s, tall and thin.

Jump to this post

@mj20 with scores like that, I would think you would qualify for bone-building drugs like Forteo, Tymlos and Evenity. Evenity builds bones very fast but cannot be followed by Forteo or Tymlos.

I chose Tymlos and will follow with Evenity if results aren't good enough. I also chose Tymlos because the delivery pen has 8 "clicks" and I could start at a low dose of two clicks and move up as my body adjusted. This minimized side effects.

With a spine score of -4.7 I would start with a bone-builder not an anti-resporptive like Fosamax. You need something stronger, I think. And I also would not do weight-bearing exercises, or I would be very careful with them. Seek advice on that. I do tai chi instead!

As @callalloo indicated, there are studies that indicate the bone-building drugs work better if you have not taken the anti-resorptives (Fosamax and other biphosphonates, or Prolia).

REPLY
@windyshores

@mj20 with scores like that, I would think you would qualify for bone-building drugs like Forteo, Tymlos and Evenity. Evenity builds bones very fast but cannot be followed by Forteo or Tymlos.

I chose Tymlos and will follow with Evenity if results aren't good enough. I also chose Tymlos because the delivery pen has 8 "clicks" and I could start at a low dose of two clicks and move up as my body adjusted. This minimized side effects.

With a spine score of -4.7 I would start with a bone-builder not an anti-resporptive like Fosamax. You need something stronger, I think. And I also would not do weight-bearing exercises, or I would be very careful with them. Seek advice on that. I do tai chi instead!

As @callalloo indicated, there are studies that indicate the bone-building drugs work better if you have not taken the anti-resorptives (Fosamax and other biphosphonates, or Prolia).

Jump to this post

Thank you so much for your advice. You seem to be so knowledgeable. I wish my primary doctor was aware of, or had recommended these other drugs. I think waiting a month to be seen by the specialist is too long. I may seek out another hospital. Thanks for your help.

REPLY
@mj20

Thank you so much for your advice. You seem to be so knowledgeable. I wish my primary doctor was aware of, or had recommended these other drugs. I think waiting a month to be seen by the specialist is too long. I may seek out another hospital. Thanks for your help.

Jump to this post

Primary care doctors see Fosamax as "front line." I have had two PCP's suggest it for

REPLY
@windyshores

Primary care doctors see Fosamax as "front line." I have had two PCP's suggest it for

Jump to this post

@mj20 Primary care doctors see Fosamax as "front line." I have had two PCP's suggest it for severe osteoporosis with fractures!

This is partly because insurance requires failing these meds before trying the bone-builders, for most patients. This needs to change because the bone-builders work best if used first.

Your osteoporosis is severe, so you should qualify for Tymlos, Forteo or Evenity. The PCP just doesn't know.

I would not take any meds while waiting a month. No need to panic either. Just be careful and maybe don't lift weights! And of course great if you can get in earlier.

REPLY
@windyshores

@mj20 Primary care doctors see Fosamax as "front line." I have had two PCP's suggest it for severe osteoporosis with fractures!

This is partly because insurance requires failing these meds before trying the bone-builders, for most patients. This needs to change because the bone-builders work best if used first.

Your osteoporosis is severe, so you should qualify for Tymlos, Forteo or Evenity. The PCP just doesn't know.

I would not take any meds while waiting a month. No need to panic either. Just be careful and maybe don't lift weights! And of course great if you can get in earlier.

Jump to this post

Thank you! I thought lifting weights was the right thing to do, so I am thankful for your advice. I am also not taking calcium, so an not sure what I should do. It would be great if doctors read this forum. Ok, I'll hang in there until I can see the Dr., but maybe I can find a closer appointment with a different rheumatologist. Thanks so much for your help. Really appreciated.

REPLY
@mj20

Thank you! I thought lifting weights was the right thing to do, so I am thankful for your advice. I am also not taking calcium, so an not sure what I should do. It would be great if doctors read this forum. Ok, I'll hang in there until I can see the Dr., but maybe I can find a closer appointment with a different rheumatologist. Thanks so much for your help. Really appreciated.

Jump to this post

Calcium via diet is best. I take supplements due to a dairy allergy. I also take Vitamin D (2-3,000 units), Vitamin K, magnesium (and potassium in the form of low sodium V-8m for leg cramps).

I don't know what weight you are lifting and also if it involves bending over 🙂

REPLY
@artscaping

Good evening @catluvr999. I am back. By the way, are you one of the folks that finds it hard to go back to a previous post........I do. The "Bookmark" feature in your profile really helps. After posting a reply or comment.....just click on the three dots and then on Bookmark. It takes you to your profile so you can find the post without hunting around.

So.....you want my T-scores. I am not an expert on this subject so, please be gentle. I hope this is helpful and would appreciate your feedback. These are all from the same Hologic Discovery densitometry system. The baseline is 10/29/18. The next one is post-Tymlos on 11/18/20. The last scan was 7/9/22.

Hip: -1.5 baseline and -1.2. Bone mineral density has not significantly changed having increased 0.9% since the previous scan.
Wrist: -3.4 baseline and then -3.2. Bone mineral density is increased by 2.6% which is not statistically significant.

Does this tell you anything about my rather rough experience and the medical value of the current weekly pill format as opposed to monthly injections? I call it, "taking less more frequently".

May you have ease and contentment.
Chris

Jump to this post

Hi. Chris. I am new to the group. I am 74. I had osteoporosis in my wrists with a score of -2.9 several years ago and then had two infusions of recast in 2016 and 2017 which I tolerated well and now last week my latest scan shows -3.3 for my wrists and continued osteopenia in my hips but not my spine. I know I am lucky that my spine is holding up well so far.

I now I need to start doing planks and pushups again. I stopped going to the gym when Covid started but did some weight work for a while but I stopped about six months ago.

Do you do anything special about your wrists?

Pat

REPLY
@windyshores

Calcium via diet is best. I take supplements due to a dairy allergy. I also take Vitamin D (2-3,000 units), Vitamin K, magnesium (and potassium in the form of low sodium V-8m for leg cramps).

I don't know what weight you are lifting and also if it involves bending over 🙂

Jump to this post

I haven't started using weights yet. I was going to dig out my Velcro wrist weights. My Dr never even gave me dietary guidance, so I've been reading about the best foods. I'm also taking two acid reflux meds prescribed by Dr, so that has to be taken into consideration, too. Thanks for your input!!

REPLY
Please sign in or register to post a reply.