Osteoporosis from high dose prednisone

Posted by isabelle7 @isabelle7, May 22 11:22pm

My husband has been on prednisone for a year. Most of that time he’s been on high doses. He’ll be on it for a while longer. It’s our understanding that the prednisone caused his newly diagnosed osteoporosis.

He was prescribed Fosamax (alendrondate.) We read the potential side effects and haven’t yet started it. His rheumatologist ordered this medication.

Anyone else experience osteoporosis from prednisone and it yes, did you take osteoporosis meds and if yes, which ones and did they help?

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

@isabelle7 I posted a long response to your other thread, with articles explaining that a bone builder, not Fosamax, should be the first treatment for osteoporosis with a -3.4 DEXA. Bone builders include Forteo and Tymlos (similar drugs) and Evenity.

If his rheumatolgist has not heard of Evenity, and suggests Fosamax for 10 years, I hope he will see a good endocrinologist who is more up to date on treatments. The endo should specialize in osteoporosis if possible.

I won't post studies again here. I do not give medical advice but point people to resources and those resources are on the other thread.

My own experience with Tymlos with a similar starting DEXA score was that I went from severe to borderline osteoporosis. I personally like Tymlos because the dose is adjustable and I could start with a lower dose and move up. Reclast of Fosamax can follow the bone builders as a sequence for treatment.

REPLY

Yes, I too have osteoporosis from too much prednisone !
I initially treated with Prolia, which has has 'significant improvements in 18 months of treatment... however, I developed difficulties with lung infections, due to lowering the immune system... I quickly add, that this is a rare reaction.... too bad, when it was working so well!
The jury is still out for me in the specialists deciding which drug to try next.
However, Forteo is the drug considered to be best for prednisone- caused osteoporosis.
Yes, there are side effects to everything. The best advise is to v tell you to talk with your doctor about your concerns. They will be balancing all your other issues to make the suggestions of treatment.
The worse thing that can happen, is that you do not treat this nasty disease, and eventually get fractures that will change your mobility and your enjoyment of life.
Please chat with your doctor.
Do lots of research.
But most of all, choose a treatment plan to address your osteoporosis.... it won't go away by itself!
I wish you the best in making this decision, and all the best for your healthier future!

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@windyshores

@isabelle7 I posted a long response to your other thread, with articles explaining that a bone builder, not Fosamax, should be the first treatment for osteoporosis with a -3.4 DEXA. Bone builders include Forteo and Tymlos (similar drugs) and Evenity.

If his rheumatolgist has not heard of Evenity, and suggests Fosamax for 10 years, I hope he will see a good endocrinologist who is more up to date on treatments. The endo should specialize in osteoporosis if possible.

I won't post studies again here. I do not give medical advice but point people to resources and those resources are on the other thread.

My own experience with Tymlos with a similar starting DEXA score was that I went from severe to borderline osteoporosis. I personally like Tymlos because the dose is adjustable and I could start with a lower dose and move up. Reclast of Fosamax can follow the bone builders as a sequence for treatment.

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@windyshores
I saw your other post and responded. The information you share, and all your knowledge, are so helpful for people like us.

I’m writing to our GP today to request a referral to an endocrinologist.

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@thisoldewe

Yes, I too have osteoporosis from too much prednisone !
I initially treated with Prolia, which has has 'significant improvements in 18 months of treatment... however, I developed difficulties with lung infections, due to lowering the immune system... I quickly add, that this is a rare reaction.... too bad, when it was working so well!
The jury is still out for me in the specialists deciding which drug to try next.
However, Forteo is the drug considered to be best for prednisone- caused osteoporosis.
Yes, there are side effects to everything. The best advise is to v tell you to talk with your doctor about your concerns. They will be balancing all your other issues to make the suggestions of treatment.
The worse thing that can happen, is that you do not treat this nasty disease, and eventually get fractures that will change your mobility and your enjoyment of life.
Please chat with your doctor.
Do lots of research.
But most of all, choose a treatment plan to address your osteoporosis.... it won't go away by itself!
I wish you the best in making this decision, and all the best for your healthier future!

Jump to this post

@thisoldewe
Thanks for your response. My husband is the one who has been on prednisone and developed osteoporosis. He’s not much into researching so I’m doing it for him. Thanks for your feedback on the meds and letting me know that Forteo is considered best with steroid induced osteoporosis. I’ll discuss it with his doctor.

Do you know if a person needs to see a dentist before staying the Forteo? It’s recommended with Fosamax. He’s adverse to going to a dentist and is panicking because I scheduled an appointment. He’s not been since 2007 though I’ve tried many times to get him to go.

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Hi @isabelle7 ,
I understand the reluctance in going to the dentist! It is always wise to "clear the decks" before embarking on a new treatment regime. Many folks hate going to the dentist... there are new methods to help folks feel better about being there.
Connect will give you a lot of info from several folk who have navigated this road of treating osteoporosis.
We are so fortunate to be living on this side of these advances to build back bone that has been lost.
As well as having a medication that is best suited for folks like us!
If your doc is not 'up' on these meds., then you could ask to see an endocrinologist. .. these are well suited to knowing these drugs and prednisone impacts. (I think in some states in the U.S., you can self-refer.)
One last thing... Fosamax has been around for some time; there may be other issues at play as to why your doc chose this drug: such as insurance, and other medical factors.
You are on the right track Isabelle7.
Sending you all the best for the decisions ahead!

REPLY
@thisoldewe

Hi @isabelle7 ,
I understand the reluctance in going to the dentist! It is always wise to "clear the decks" before embarking on a new treatment regime. Many folks hate going to the dentist... there are new methods to help folks feel better about being there.
Connect will give you a lot of info from several folk who have navigated this road of treating osteoporosis.
We are so fortunate to be living on this side of these advances to build back bone that has been lost.
As well as having a medication that is best suited for folks like us!
If your doc is not 'up' on these meds., then you could ask to see an endocrinologist. .. these are well suited to knowing these drugs and prednisone impacts. (I think in some states in the U.S., you can self-refer.)
One last thing... Fosamax has been around for some time; there may be other issues at play as to why your doc chose this drug: such as insurance, and other medical factors.
You are on the right track Isabelle7.
Sending you all the best for the decisions ahead!

Jump to this post

@thisoldewe
Thanks Christine! I appreciate your feedback.

We have excellent insurance so that should not be an issue. We pay $5 for a month's worth of Actemra which costs about $5,000 per month. So I don't think the insurance would have any issue with the other drugs. It's a matter of the doctor prescribing it for us.

You're right that we're lucky to be living on this side of advances to build back bone. I am writing to our GP today to ask about either referring us to an Endocrinologist or asking if he'll prescribe another drug. From what I've read, and advice given to me here, it seems that when dealing with steroid-induced osteoporosis the best drugs of choice are bone builders like Evenity, Tymlos and Forteo. Someone posted a response to me earlier today saying that what my husband was prescribed, Fosamax, is first-line in the context of taking it within the first three months. He's been on high-dose prednisone for a year so like she said, that ship has sailed. Too bad our doctor didn't know about this and didn't prescribe it as a preventative, or order a bone density scan earlier on. Instead, it was me who had to ask for the scan after seeing results of CT scans and xrays that were concerning, including a compression fracture that showed up in Feb 2024 that wasn't there in May 2023. Ugh!

I totally understand my husband's reluctance and fear of going to the dentist. But I feel not going can have some pretty serious repercussions. He needed thousands of dollars worth of work in 2007 so I know there are issues. What they are I don't remember.

Thanks for your support!! I'm wishing you the best in health!

REPLY
@isabelle7

@thisoldewe
Thanks Christine! I appreciate your feedback.

We have excellent insurance so that should not be an issue. We pay $5 for a month's worth of Actemra which costs about $5,000 per month. So I don't think the insurance would have any issue with the other drugs. It's a matter of the doctor prescribing it for us.

You're right that we're lucky to be living on this side of advances to build back bone. I am writing to our GP today to ask about either referring us to an Endocrinologist or asking if he'll prescribe another drug. From what I've read, and advice given to me here, it seems that when dealing with steroid-induced osteoporosis the best drugs of choice are bone builders like Evenity, Tymlos and Forteo. Someone posted a response to me earlier today saying that what my husband was prescribed, Fosamax, is first-line in the context of taking it within the first three months. He's been on high-dose prednisone for a year so like she said, that ship has sailed. Too bad our doctor didn't know about this and didn't prescribe it as a preventative, or order a bone density scan earlier on. Instead, it was me who had to ask for the scan after seeing results of CT scans and xrays that were concerning, including a compression fracture that showed up in Feb 2024 that wasn't there in May 2023. Ugh!

I totally understand my husband's reluctance and fear of going to the dentist. But I feel not going can have some pretty serious repercussions. He needed thousands of dollars worth of work in 2007 so I know there are issues. What they are I don't remember.

Thanks for your support!! I'm wishing you the best in health!

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You are so welcome! Let us know how you progress!
All the best to you both.

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@thisoldewe

You are so welcome! Let us know how you progress!
All the best to you both.

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@thisoldewe
Thanks! I will. All the best to you too.

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