Hello, I joined today to get help in deciding what medication to begin

Posted by luluz @luluz, Apr 12 4:43pm

Hello, I need help in deciding what medication to begin taking for osteoporosis. I’ve been prescribed Tymlos and the box warning for bone cancer is very concerning. Prolia was second option but that also has its drawbacks. I would appreciate hearing from people who are taking these medications and if they have experienced any serious side effects.

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

I meant to say that your darling has good alignment everywhere, but with a slight out curvature on the left and just as slight in curvature on the right (levoscoiosis) And the slight displacement forward of L3.

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We are not trained, as both @gently and I have cautioned. I hope you were able to read the links provided.

I sympathize. My spine is a mess 🙂 But over the years I have gotten back to long walks. I don't life anything more than a seltzer bottle. Tai Chi has helped me and the PT does massage. The big question is always whether surgery is needed. Otherwise, we take care of symptoms. I also use a muscle relaxant (either Baclofen or Klonopin- can't tolerate Flexiril) rarely but when needed.

My main question is why fractures with osteopenia. I mean, it happens. How long will he be on steroids? I was told doses udner 5mg aren't as problematic for bones. I got my mother on 5mg long term and we eventually got her down to 2 mg.

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@isabelle7

@windyshores

Thank you for your reply. I appreciate your time to review and give your thoughts on his results. I've got an email to his endocrinologist and waiting to hear back. He also has an appointment with a physical therapist on Friday (virtual appt) to discuss test results and to determine if he's knowledgeable enough about osteoporosis to make an in-person appointment. I asked about an orthopedic surgeon and our GP said no, but I didn't ask for an orthopedist who doesn't do surgery. I can try that.

That's good to hear your thoughts that the L1 fracture at 25% might not be bad - it had me worried as I believe it's new. Thank you for the links. I will check them out.

I thought it was interesting that it noted osteopenia when he's been diagnosed with osteoporosis (lumbar spine at -3.3.) I've included his scores from the bone scan below.

Bone scan results:

Tallest height patient has ever been (patient reported): 71 in
Current height: 69.5 in

Risk factors entering to the FRAX in this patient:
Glucocorticoids (Chronic)

10 YEAR FRACTURE PROBABILITY
Based on FRAX (R) TOOL- https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9

Major osteoporotic fracture: 11.6%
Hip fracture: 4.2%

LUMBAR SPINE
Bone Mineral Density: 0.81 g/cm2
LUMBAR SPINE T-SCORE: -3.30
Z-score: -2.80

LEFT TOTAL HIP
Bone Mineral Density: 0.79 g/cm2
LEFT TOTAL HIP T-SCORE: -2.10
Z-score: -1.30

RIGHT TOTAL HIP
Bone Mineral Density: 0.73 g/cm2
RIGHT TOTAL HIP T-SCORE: -2.60
Z-score: -1.70

LEFT FEMORAL NECK
Bone Mineral Density: 0.87 g/cm2
LEFT FEMORAL NECK T-SCORE: -1.50
Z-score: -0.20

RIGHT FEMORAL NECK
Bone Mineral Density: 0.83 g/cm2
RIGHT FEMORAL NECK T-SCORE: -1.80
Z-score: -0.50

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@isabelle4 I would definitely go with the DEXA. I have had imaging that said "osteopenia" which I know for a fact is wrong!

25% is borderline between mild and moderate:

Mild: Up to 20-25% vertebral height loss. These are often related to osteoporosis and may not cause significant symptoms.
Moderate: 25-40% vertebral height loss.

I hope he gets good help. I have 7 spinal fractures, many moderate, scoliosis, degenerative changes, spinal cord damage, stenosis but am doing pretty well. My main comment is that healing takes time but it can happen! I am no longer afraid to shake hands unless it's a big person 🙂

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@windyshores

@isabelle4 I would definitely go with the DEXA. I have had imaging that said "osteopenia" which I know for a fact is wrong!

25% is borderline between mild and moderate:

Mild: Up to 20-25% vertebral height loss. These are often related to osteoporosis and may not cause significant symptoms.
Moderate: 25-40% vertebral height loss.

I hope he gets good help. I have 7 spinal fractures, many moderate, scoliosis, degenerative changes, spinal cord damage, stenosis but am doing pretty well. My main comment is that healing takes time but it can happen! I am no longer afraid to shake hands unless it's a big person 🙂

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@windyshores

You are so awesome and helpful!!! I honestly can’t thank you enough. You give me hope when sometimes, being honest, I feel a bit hopeless. And helpless. But from what you say and that I’m learning through doing research we are far from hopeless or helpless.

I just received a response from his endocrinologist and it’s unsettling. But we will deal with it. Here’s what she said:

Hi Dave/Isabelle,

Yes, the x-rays show a new compression fracture at L1 and possibly at L3. This most likely happened when he had the pain unloading the dishwasher.

Treatment of these fractures is usually conservative - treating pain +/- bracing if needed.

Dave, let me know if your pain is stable, better or worse since we talked a few weeks ago and whether you are able to stand up straight.

If pain is significant then you can take Tylenol 1000 mg three times daily. If this doesn't help then I can prescribe calcitonin nasal spray for you to take for 2-4 weeks.

I have ordered x-rays for 7/16/24 to confirm that the fractures are stable. You don't need an appointment for this.

Forteo is the best treatment option for your osteoporosis. I have entered the prescription. Please call the pharmacy for a price check. Let me know whether it is affordable. If it's not then I recommend Reclast instead.

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@windyshores

@isabelle4 I would definitely go with the DEXA. I have had imaging that said "osteopenia" which I know for a fact is wrong!

25% is borderline between mild and moderate:

Mild: Up to 20-25% vertebral height loss. These are often related to osteoporosis and may not cause significant symptoms.
Moderate: 25-40% vertebral height loss.

I hope he gets good help. I have 7 spinal fractures, many moderate, scoliosis, degenerative changes, spinal cord damage, stenosis but am doing pretty well. My main comment is that healing takes time but it can happen! I am no longer afraid to shake hands unless it's a big person 🙂

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@windyshores

Update after my last response. LOL

I was reading again all the issues you've had and you sure do give me hope!!! I was recently diagnosed with cervical stenosis that's gotten worse over the past years. Which I can understand due to activities I've engaged in without knowing I had this, that probably exacerbated it. Oh, well. Anyway, mine is quite severe from what I read, but I don't have any numbness or issues like that. I do get arm and hand pain but I can usually deal with it and get rid of it with a few days on Advil. My doctor ordered an MRI and I'm debating whether to go through with it now or wait.

Back to my husband. I am very happy to say I found out today that our insurance will cover Forteo and it has been ordered!!! We should have it in the next few days. Our co-pay is only $15 per month which is such a relief!!

Thanks again for all of your knowledge and your willingness to share it with us who are new to all of this.

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@isabelle7

@windyshores

You are so awesome and helpful!!! I honestly can’t thank you enough. You give me hope when sometimes, being honest, I feel a bit hopeless. And helpless. But from what you say and that I’m learning through doing research we are far from hopeless or helpless.

I just received a response from his endocrinologist and it’s unsettling. But we will deal with it. Here’s what she said:

Hi Dave/Isabelle,

Yes, the x-rays show a new compression fracture at L1 and possibly at L3. This most likely happened when he had the pain unloading the dishwasher.

Treatment of these fractures is usually conservative - treating pain +/- bracing if needed.

Dave, let me know if your pain is stable, better or worse since we talked a few weeks ago and whether you are able to stand up straight.

If pain is significant then you can take Tylenol 1000 mg three times daily. If this doesn't help then I can prescribe calcitonin nasal spray for you to take for 2-4 weeks.

I have ordered x-rays for 7/16/24 to confirm that the fractures are stable. You don't need an appointment for this.

Forteo is the best treatment option for your osteoporosis. I have entered the prescription. Please call the pharmacy for a price check. Let me know whether it is affordable. If it's not then I recommend Reclast instead.

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@isabelle7 I just saw this- after your later post!

Fractures are sometimes treated with Kyphoplasty- injection of a kind of cement into the space. However if his spine is not curved, he probably doesn't need it and my docs said the outcome would be the same with or without.

There are three possible medications: Forteo and Tymlos (similar to each other), and Evenity (different mechanism). I don't think Reclast is the only other choice besides Forteo. You can ask the endocrinologist about Tymlos or Evenity if you cannot pay for Forteo.

These companies have patient assistance programs if you meet income guidelines. I got 18 months of Tymlos for free at Radius Assist.

The pain and disability from fractures got better for me- not 100% but much better. I was crawling on the floor in pain and could not cook, do laundry, etc. So yes there is probably going to be a lot of improvement.

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@windyshores

@isabelle7 I just saw this- after your later post!

Fractures are sometimes treated with Kyphoplasty- injection of a kind of cement into the space. However if his spine is not curved, he probably doesn't need it and my docs said the outcome would be the same with or without.

There are three possible medications: Forteo and Tymlos (similar to each other), and Evenity (different mechanism). I don't think Reclast is the only other choice besides Forteo. You can ask the endocrinologist about Tymlos or Evenity if you cannot pay for Forteo.

These companies have patient assistance programs if you meet income guidelines. I got 18 months of Tymlos for free at Radius Assist.

The pain and disability from fractures got better for me- not 100% but much better. I was crawling on the floor in pain and could not cook, do laundry, etc. So yes there is probably going to be a lot of improvement.

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@windyshores

Thanks for the information!! I think if they offer the injection I'll pass if the outcome is going to be the same with or without it. Doesn't seem like it's worth going through if it's not going to make a difference in the outcome. Unless there is a great reduction in pain. However, he's not in nearly the pain you were in. I'm so sorry you went through that!!

Yesterday I called the pharmacy and found out we're covered for the Forteo!! So one less thing to worry about. Our co-pay is only $15 per month. We probably wouldn't meet the income guidelines so we're very lucky that they are covering it.

My poor husband did not take the news well about having another fracture. I've had long talks with him and he seems to be feeling a bit better about it today. I read him your message from yesterday with all that you've been through and how you're doing much better. I think it helped him put it all in perspective. Also, he's still able to do most things and his back pain is improving. The problem I have with him now is he doesn't listen when I tell him he can't bend forward, reaching down to the ground (I've read that's not good for people with osteoporosis). That's how he fractured this time - bending down to empty the bottom rack of the dishwasher. He doesn't like any restrictions and I told him if he doesn't pay attention, learn what he should and shouldn't do, things could be a whole lot worse for him. I hurt my back and neck in a car accident many years ago and was on my back for six weeks in a brace. It was awful! No cell phones. No TV remotes. Nothing. I didn't have a significant other to take care of me so I was at the mercy of friends who would stop by - and sometimes they would forget. It was an awful situation. When I ran that by him I think it also made him think.

Where can we learn what the best moves are, best exercises, etc? I've been trying to research it and there's so much conflicting info out there.

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@isabelle7

@windyshores

Thanks for the information!! I think if they offer the injection I'll pass if the outcome is going to be the same with or without it. Doesn't seem like it's worth going through if it's not going to make a difference in the outcome. Unless there is a great reduction in pain. However, he's not in nearly the pain you were in. I'm so sorry you went through that!!

Yesterday I called the pharmacy and found out we're covered for the Forteo!! So one less thing to worry about. Our co-pay is only $15 per month. We probably wouldn't meet the income guidelines so we're very lucky that they are covering it.

My poor husband did not take the news well about having another fracture. I've had long talks with him and he seems to be feeling a bit better about it today. I read him your message from yesterday with all that you've been through and how you're doing much better. I think it helped him put it all in perspective. Also, he's still able to do most things and his back pain is improving. The problem I have with him now is he doesn't listen when I tell him he can't bend forward, reaching down to the ground (I've read that's not good for people with osteoporosis). That's how he fractured this time - bending down to empty the bottom rack of the dishwasher. He doesn't like any restrictions and I told him if he doesn't pay attention, learn what he should and shouldn't do, things could be a whole lot worse for him. I hurt my back and neck in a car accident many years ago and was on my back for six weeks in a brace. It was awful! No cell phones. No TV remotes. Nothing. I didn't have a significant other to take care of me so I was at the mercy of friends who would stop by - and sometimes they would forget. It was an awful situation. When I ran that by him I think it also made him think.

Where can we learn what the best moves are, best exercises, etc? I've been trying to research it and there's so much conflicting info out there.

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You can tell him it's not forever. Forteo may very well make it possible for him to empty the dishwasher in 12=18 months. Everyone is different but Tymlos, a similar drug, improved my spine 20% and I went from severe to borderline osteoporosis. I still wouldn't bend and lift anything heavy, even two bowls at a time!

Margaret Martin at melioguide.com is the best for exercises. She has a website with videos and a book. Recently she posted a class for those of us with fractures, though it costs $89. I just withdrew from a PT program since few understand fractures. I did have a good PT who did massage and careful exercise but she retired.

Sounds like he is doing pretty well except for the risk of fractures. I am sorry for what you went through! I could at least watch movies in bed!

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