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Does anyone have a solution to help manage Reclast side effects?
Osteoporosis & Bone Health | Last Active: Dec 19, 2024 | Replies (331)Comment receiving replies
I plan to order "Great Bones", today. I am very excited to read this book since I read the previous comments. I took Prolia for one year and had severe muscle and bone pain after the second injection. I then took Reclast for one year, because I was told that I could not just stop Prolia without taking Reclast to protect me from the side effects of stopping Prolia. It is now two years later and I had a Dexa scan and my Osteoporosis is worse by 20% from what it was before I took Prolia. I recently had five of my ribs fracture and I am at high risk for fracture without impact in my hip and spine. Apparently I must take another "bone medication", but my endocrinologist has said that the drug I take is up to me. I don't know what drug to take. I have sought a second opinion from the head of Endocrinology and he said he will do blood work after another month, to help decide what drug I should take. He wants to give my ribs more time to heal. I do not know what drug to take. I don't want to take any of them, but I also do not want to have any more fractures. Before I took Prolia I asked for the drug that had the least side effects. That did not turn out to be what I experienced. Any advice from my fellow friends with Osteoporosis? Thank you !!!!!
Replies to "I plan to order "Great Bones", today. I am very excited to read this book since..."
@hlp123
In your situation I would want to take Tymlos to build the strongest bone fastest.
The anabolic drugs Forteo and Tymlos are the two that add normal bone and correct bone architecture for strength.
Those ribs can be so painful. Tymlos or Forteo would decrease the time it take for them to heal.
You had good advice with taking Reclast, but Prolia's rebound is fierce and with some people Reclast, the strongest bisphosphonate, is not always strong enough to prevent the multiple fractures that Prolia can cause when you stop taking it.
I've only taken Forteo and while I am completely happy with the drug I consider Tymlos a stronger medicine as it i includes a protein that Forteo doesn't contain.
I can't think of any advantage in waiting to give the ribs more time to heal, when you could take medication that would speed their healing.
Knowing the cause of your osteoporosis would impact choice.
Bless your bones.
@hlp123 Sorry about your bone troubles. Reclast is the most powerful bisphosphonate and most often used to follow Prolia but it does not always work. What I'm about to say next may be too late to help you and it is certainly not to criticize you but it's what should have happened when you stopped Prolia.
If you do not test bone markers (CTX and P1NP maybe) you cannot know whether Reclast is working until it is too late. Some top doctors (who are doing what's best imo) will have you do multiple checks of CTX starting before the Reclast infusion and then shortly after the infusion to see if you are suppressing the fast bone resorption that stopping Prolia can cause. If you are one of the unlucky ones where the first infusion of Reclast did not work they give you another infusion. And test CTX again. If that does not work they might try Evenity I would guess (I cannot remember what was suggested at that point). I believe this was discussed at the last Santa Fe bone conference.
BTW, Evenity is the most powerful bone builder (as proven by multiple studies) and it has a pretty good track record in terms of side effects. It might well be appropriate for your situation.
BTW, bone markers are greatly altered by fractures so you would need someone really experienced to help understand their meaning in your situation with recent fractures.
Also it would be helpful if everyone seeking advice posted their DXA scores to help clarify their situation. It really helps to make sense of things.
Best of luck to you in your difficult situation.
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@hlp123 so sorry this happened to you. And you only took Prolia for one year, followed by the suggested Reclast,
I hope you have a good endocrinologist. Not sure what if any studies show about this sequence. Chances are the doc will try Forteo, Tymlos or Evenity.
Someone posted good results for Evenity after Prolia, though effectiveness was reduced. The same might be true for Evenity after Reclast but again, someone on this forum posted good results for that too.
"Great Bones" says that Forteo and Tymlos aren't effective right after Prolia (due to rebound) but we would be interested to hear if they are possible in your situation. I know Tymlos is reputed to help with healing since I took it right after spinal fractures.
I am so glad that you got the head of Endo involved. Since you have fractures after (because of?) treatment, perhaps the doctors will take extra care in their recommendation. Let us know!