Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

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@windyshores

@paula630 I thought Reclast increases bone density. It seems like semantics on the part of the doc who said it doesn't "grow bone." Right? Yes, it is not anabolic. It is anti-resorptive and increases density by lowering turnover. As I am sure you know.

from drugs.com "After treatment with Reclast, BMD increased by 11% from baseline after one year of treatment and by 20.7% from baseline after two years of treatment."

Here is what the doc may have been referring to:
ExcretionUrine (39% ± 16% as unchanged drug) within 24 hours; feces (< 3%)
Half-Life Elimination Triphasic; Terminal: 146 hours
so yeah techically it is "eliminated" relatively quickly but stays around for a long time in bone...

So technically Reclast is "elminated" fairly quickly (via urine) but remains in bone for years and is slowly released. Again the doctor's comments seem like semantics.
From drugs.com:
Zoledronic acid, which is the active ingredient in Reclast, can remain in your body for weeks or years after your last dose1. Reclast is an effective treatment and should improve bone density for around 2-3 years after a person stops treatment2. Side effects such as bone, joint, or musculoskeletal pain may occur days, months, or years after starting therapy3.

I have read somewhere that it can last 10 years. I am not sure. Ask the doc!

I have been concerned about osteoarthritis and bone spurs getting worse on Reclast and especially Evenity but not sure that is studied. Please share if you find anything. Time will tell. Most of the drug info sites mention spinal and joint pain. I have two autoimmune diseases and tend to have a lot of side effects.

Bur for many it is helpful and doesn't have bad side effects. Unfortunately we need it or Fosamax after other meds.

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@windyshores Thamks so much for all the information you provided - and to everyone here. Certainly gives me comfort having a support group like this. I should have results by Monday and doctor follow-up soon after. Now I feel more knowledgeable and will be ready with some questions.
I truly do feel my doctor has been a partner in my journey. When my torn rotator cuff surgery was stopped because my bones “were like butter,” this doctor (endocrinologist) prescribed Tymlos (for 2 years) as well as discussed diet and supplements. After the 2 yrs, I had a successful Rotator cuff surgery and that’s when we moved over to Reclast. Started with 1/2 dose year 1; next year had full dose; due to have dose 3 in 2025. But, as mentioned, broken wrist with a black ice fall, and Dr suggested getting a “booster” 6 mos early. I thought a booster would be half dose, busy they gave me full. That was in August and here we are.
Stay tuned for test results and Thanks to all for listening.

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@hlp123

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 !!!!!

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@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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@paula630

@windyshores Thamks so much for all the information you provided - and to everyone here. Certainly gives me comfort having a support group like this. I should have results by Monday and doctor follow-up soon after. Now I feel more knowledgeable and will be ready with some questions.
I truly do feel my doctor has been a partner in my journey. When my torn rotator cuff surgery was stopped because my bones “were like butter,” this doctor (endocrinologist) prescribed Tymlos (for 2 years) as well as discussed diet and supplements. After the 2 yrs, I had a successful Rotator cuff surgery and that’s when we moved over to Reclast. Started with 1/2 dose year 1; next year had full dose; due to have dose 3 in 2025. But, as mentioned, broken wrist with a black ice fall, and Dr suggested getting a “booster” 6 mos early. I thought a booster would be half dose, busy they gave me full. That was in August and here we are.
Stay tuned for test results and Thanks to all for listening.

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@paula630 I am so glad you feel your doctor is a true partner and also that you did two years Tymlos and were able to have the rotator cuff surgery. Sorry about the wrist!

I think many on here will be interested in the fact that you had a half dose Reclast initially. I have posted that I had a low dose due to afib and kidney issues but those conditions meant that I didn't have to ask for low dose.

One of my endos told me they often do half dose, and the infusion nurse said the same thing. Yet on this forum there is discussion of how Reclast is "one size fits all" and to some, that means harmful side effects.

I have done Tymlos, Evenity and Reclast at less than full doses and I believe the solution for those of us who are sensitive is to work with our doctors to make adjustments and accommodations. I am, as I wrote before, so glad you have a doctor like that.

Good luck with your appointments and it is wonderful for all of us to have a support group- glad it helped!

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@windyshores

@paula630 I am so glad you feel your doctor is a true partner and also that you did two years Tymlos and were able to have the rotator cuff surgery. Sorry about the wrist!

I think many on here will be interested in the fact that you had a half dose Reclast initially. I have posted that I had a low dose due to afib and kidney issues but those conditions meant that I didn't have to ask for low dose.

One of my endos told me they often do half dose, and the infusion nurse said the same thing. Yet on this forum there is discussion of how Reclast is "one size fits all" and to some, that means harmful side effects.

I have done Tymlos, Evenity and Reclast at less than full doses and I believe the solution for those of us who are sensitive is to work with our doctors to make adjustments and accommodations. I am, as I wrote before, so glad you have a doctor like that.

Good luck with your appointments and it is wonderful for all of us to have a support group- glad it helped!

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UPDATE: Just got a message in my portal from my doctor. Two of the tests came back with Red flags.
Erythrocyte Sedimentation Rate: Value 65 (should be < 30)
C-Reactive Protein: Value 20.6 (should be < 8)
She said you must see a Rheumatologist ASAP. I spent most of today trying to find someone who could see me in 2024!
I e already been through many tests by my PCP that included Lyme, Lupus, Rheumatoid arthritis and autoimmune issues. All negative. My gut still says it’s Reclast - keeping fingers crossed.

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@paula630

UPDATE: Just got a message in my portal from my doctor. Two of the tests came back with Red flags.
Erythrocyte Sedimentation Rate: Value 65 (should be < 30)
C-Reactive Protein: Value 20.6 (should be < 8)
She said you must see a Rheumatologist ASAP. I spent most of today trying to find someone who could see me in 2024!
I e already been through many tests by my PCP that included Lyme, Lupus, Rheumatoid arthritis and autoimmune issues. All negative. My gut still says it’s Reclast - keeping fingers crossed.

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@paula630 could you have an infection? My tests were like that with COVID. Also with Lyme disease. Lyme testing often has false negatives if the Elisa was used. Western Blots are better but only used if the Elisa is positive. The Western Blot has "bands." The CDC definition of positive requires a certain number of bands. But some doctors go by which bands are specific for Lyme (23 for instance) and say even one means a positive. There are "Lyme literate" doctors and there is a lot of controversy on diagnosis and treatment See lymnet.org.

Just a thought.

If your ANA (antinuclear antibody) and rheumatoid panel are negative it is quite a mystery to have such a high sed rate and CRP. Hope you get some answers!

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@windyshores

@paula630 could you have an infection? My tests were like that with COVID. Also with Lyme disease. Lyme testing often has false negatives if the Elisa was used. Western Blots are better but only used if the Elisa is positive. The Western Blot has "bands." The CDC definition of positive requires a certain number of bands. But some doctors go by which bands are specific for Lyme (23 for instance) and say even one means a positive. There are "Lyme literate" doctors and there is a lot of controversy on diagnosis and treatment See lymnet.org.

Just a thought.

If your ANA (antinuclear antibody) and rheumatoid panel are negative it is quite a mystery to have such a high sed rate and CRP. Hope you get some answers!

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Thank you for all your insights. I had heard that about Lyme (my SIL had it) and will ask again. I guess I’ll learn more as soon as I can get a Rheumatology appt. Very much appreciate this Forum!!

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@paula630

Thank you for all your insights. I had heard that about Lyme (my SIL had it) and will ask again. I guess I’ll learn more as soon as I can get a Rheumatology appt. Very much appreciate this Forum!!

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@paula30 though I generally use mainstream doctors, I did find a "Lyme literate" doctor for Lyme testing. I was CDC positive anyway. The site lymenet.org has a lot of stuff that is "out there" but the find a doctor function is helpful.

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Appreciate this info and all your help. Will look today. trying to keep a good attitude at least.

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@awfultruth

@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.

Jump to this post

Thank you so much for your response ! Yes, the endocrinologist that I sought for a second opinion said that even though I was diagnosed with fractured ribs in August, that I had to wait until December and then get the blood work that he wanted to give my ribs a chance to heal before he would decide what medication I should take to protect my bones. My bone density score from from August 27th are : Lumbar spine L-1-L-4 level at -1.7, at L-2-L-4 level at -2.2, at femoral neck -3.1, hip at -3.2 I really appreciate the helpful advice from you. After my year on Reclast, the doctor said the dexa scan showed that the Reclast had locked in the gains from the Prolia and that I would me ok. This is not the case.
Thank you !

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Thank you for your response ! I will message my endocrinologist and try to clarify his insistence that I wait until the middle of December to see what the results of the blood work are !
Thank you

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