Drug vacations

Posted by serious @serious, Aug 28 11:00am

I have been on a drug vacation from oral bisphosphonates, which worked very well, for one year. How do you know whether to extend the vacation for a second year or go to something else. My CTX and P1NP numbers appear stable. The something else that would probably be suggested is either Prolia for a Reclast shot. Any advice or suggestions or experiences here?

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I just had the second CTX taken , the first was right before going on this vacation, The end dr messaged that the CTX and PINP appeared stable. I will see her after one year in a few weeks. I am trying to collect information so I can intelligently talk to her. So, if the CTX and P1nP are stable, any suggestions on what I should do? Should I remain on vacation a while longer? Take a bone building medication instead of Reclast or Prolia?

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If you were on a bisohosphonate and have done well on a drug holiday, your scores must not have been severe. They don’t grow new bone, they typically help with fractures. Because my bone loss was so severe I was on Tymlos for 2 years. I’ve been on a short 3 month drug holiday between my 2-year Tymlos protocol and possibly beginning Evenity (both bone builders). I was placed on bioidentical hormones a couple of months ago, mainly for my lack thereof but also to support my bones. I’m praying that the 15% gain I got from Tymlos does not wane in 3 months. I stay active with pickleball and hiking so I’m hopeful I won’t lose too much of my gains. I’m heading out on a 3-week international vacay and want to wait to begin a new drug until we return in case of side effects. Hoping I’ll do as well on Evenity as I did on Tymlos. I hope you can continue on you drug holiday with no declines.

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@mayblin

Thank you @serious! If your dexa results have been stable during that period with these meds, that is wonderful. Does your doctor use CTX results to determine your "on" or "off" a medication? I'm trying to understand with your current CTX, why reclast or prolia is being proposed.

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I. Am also trying to understand that.

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@serious

I just had the second CTX taken , the first was right before going on this vacation, The end dr messaged that the CTX and PINP appeared stable. I will see her after one year in a few weeks. I am trying to collect information so I can intelligently talk to her. So, if the CTX and P1nP are stable, any suggestions on what I should do? Should I remain on vacation a while longer? Take a bone building medication instead of Reclast or Prolia?

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Hi @serious dooshi has a great point in her reply. If your Dexa has been relatively stable with 30-year treatment of bisphosphonates, evista and holidays (without fractures I assume), that’s a great achievement. Some people with osteoporosis may have a more progressive disease which might be hard to manage well in a span of 30 years.

My take is it’s definitely worth discussing with your endo based on your current Dexa readings as well as your frax risk:
What’s best for your bone going forward - more antiresorptives (bisphosphonates, prolia) or a bone builder (forteo/tymlos vs evenity), since you had been on bisphosphonates for many years;
If an antiresorptive again, your endo’s opinions on the pros and cons for reclast vs prolia.

Getting your endo’s train of thought is important. Getting your own thoughts ready prior to the discussion with your endo. Might need a follow-up meeting shortly after so that you could gather more understanding to discuss more with your endo. That way you are not rushed into making a decision, although it might be better not to wait too long since you are on a holiday from risedronate.

May I ask how many years total you had been on fosamax? And if you don’t mind, what’s your latest P1NP reading?

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i was on Fosamax several years ago for about five years. Then I went on Evista for several years until five years ago. I had something called NTX recently which was 39 ad CTX which was 233. These were about the same one year ago.

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Serious, I am on a drug vacation for a year from Reclast shots. I will see my endocrinologist, January 2025. During this visit we will evaluate my condition and discuss the treatment. I have been on every existing drug to treat osteoporosis. Now I am stable. I take calcium supplements, exercise and eat a balanced diet.

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Any idea of what might happen in January or what you might want to happen?

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@dooshie

If you were on a bisohosphonate and have done well on a drug holiday, your scores must not have been severe. They don’t grow new bone, they typically help with fractures. Because my bone loss was so severe I was on Tymlos for 2 years. I’ve been on a short 3 month drug holiday between my 2-year Tymlos protocol and possibly beginning Evenity (both bone builders). I was placed on bioidentical hormones a couple of months ago, mainly for my lack thereof but also to support my bones. I’m praying that the 15% gain I got from Tymlos does not wane in 3 months. I stay active with pickleball and hiking so I’m hopeful I won’t lose too much of my gains. I’m heading out on a 3-week international vacay and want to wait to begin a new drug until we return in case of side effects. Hoping I’ll do as well on Evenity as I did on Tymlos. I hope you can continue on you drug holiday with no declines.

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I just completed 12 months of Evenity and had zero side effects. I had good results, with improvements in t-scores from 2.5 to 1.9, and similar. I was astounded. I haven’t seen my specialist yet. I had previously been treated for the last 22 years as well, with Actonel, then Reclast. I’m not sure what comes next. I’m 67.

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What I would like to do is stall for time some more. While I understand there are no new medications in sight, I think there are may trials on best sequencing of these drugs, on cutting down the times they are to be used or increasing time they are to be used, and there is some talk of a forteo type drug that is in trial in pill form.

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@serious

i was on Fosamax several years ago for about five years. Then I went on Evista for several years until five years ago. I had something called NTX recently which was 39 ad CTX which was 233. These were about the same one year ago.

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@serious from what ive read, your CTX level seemed reasonable after being on a bisphosphonate such as risedronate, although it could be a lot lower if fosamax or reclast is used. That being said, bear in mind that since risedronate is a weaker bisphosphonate and a shorter-acting one, your CTX might need to be monitored more frequently if you'd like to have an extended holiday. This could be a discussing point with your endo.

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