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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@heartfelt70

I called the FDA in Atlanta on the correct line for help. I got a recording. There is no help and if you find any please let me know. No doctor will say it was Reclast. They make money for our taking the infusion.
I eat really well, and cut out specific foods that are bad for bones. I walk and lift weights. I take supplements and I do have chlorophyll that is mixed with water and I drink that. There is a lot of information out there about osteoporosis. There are online groups and special exercise coaches just for people with low bone mass. Check them out. You will find more information online than from any doctor.

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Oh gosh, it's horrible we can't get the help when we need it. I'm trying to decide between Reclast and Prolia. But, where do you get the Chlorophyll and how does that help with the side effects of Reclast?

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@255anny

Oh gosh, it's horrible we can't get the help when we need it. I'm trying to decide between Reclast and Prolia. But, where do you get the Chlorophyll and how does that help with the side effects of Reclast?

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@255anny if your kidneys are okay, there seems to be a good chance that you will do fine on Reclast, based on what friends and some posters have said. The list of side effects are daunting but most of us don't get a lot of them. On a partial dose, I had fever for 5 days which was no biggie, a few weeks of pins and needles and a temporary increase in tinnitus. The remaining two months I have been fine. I have another one 9/11.

I have two questions and this info is on charts in various places (Maybe Leder's video on You Tube). How much more gain will you get in that one year on Prolia vs Reclast? And will Reclast follow up prevent loss of that gain? What is the net difference between Reclast for two years vs Prolia 1 year then Reclast 1 year?

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@windyshores

@255anny if your kidneys are okay, there seems to be a good chance that you will do fine on Reclast, based on what friends and some posters have said. The list of side effects are daunting but most of us don't get a lot of them. On a partial dose, I had fever for 5 days which was no biggie, a few weeks of pins and needles and a temporary increase in tinnitus. The remaining two months I have been fine. I have another one 9/11.

I have two questions and this info is on charts in various places (Maybe Leder's video on You Tube). How much more gain will you get in that one year on Prolia vs Reclast? And will Reclast follow up prevent loss of that gain? What is the net difference between Reclast for two years vs Prolia 1 year then Reclast 1 year?

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Your questions align with my thoughts!
But my Dr wants me to do Prolia for 1 yr then go back to Evenity!!! That suggestion concerns me as the Evenity is not as strong as the Reclast in holding down the rebounding effects.

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@255anny

Your questions align with my thoughts!
But my Dr wants me to do Prolia for 1 yr then go back to Evenity!!! That suggestion concerns me as the Evenity is not as strong as the Reclast in holding down the rebounding effects.

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On another thread someone posted (Mayblin?) a study showing that Evenity prevented rebound and there was a slight rise in bone density, maybe in the spine (sorry my memory..). Did you see it? Not sure if the gain would be better than with Reclast. Argh there is so little to go on!

So far I am doing Reclast low dose (after Tymlos and 4 months Evenity) , and after I have done enough to hold or gain, will take a holiday, then decide on anabolic. I am hoping we know more about Evenity in a couple of years.

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@255anny

Oh gosh, it's horrible we can't get the help when we need it. I'm trying to decide between Reclast and Prolia. But, where do you get the Chlorophyll and how does that help with the side effects of Reclast?

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You can get it from Amazon or in Healthy grocery stores, etc. I first got it at Sprouts ,and then when they were without, I found it on Amazon. Chlorophyll cleans every cell in the body. It is a purifier. It is used for multiple purposes.

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I am new to the group. I had a hip replacement 5 months ago and the surgeon told me after surgery that he was sure I had osteoporosis and to contact my primary for testing. I had not had a scan in two years, so one was scheduled along with an MRI due to hip (good) and back pain. Sure enough I have osteoporosis and was recommended to start reclast. I have not started as I wanted to do research. I am not one who likes to take medicine without knowing as much as I can. I am glad I joined this group and the information provided by everyone is very beneficial to a new comer. I am still researching but what I have read so far I am not inclined to take the reclast. I hope to find soon the right medicine/treatment for me.

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@bmrus

I am new to the group. I had a hip replacement 5 months ago and the surgeon told me after surgery that he was sure I had osteoporosis and to contact my primary for testing. I had not had a scan in two years, so one was scheduled along with an MRI due to hip (good) and back pain. Sure enough I have osteoporosis and was recommended to start reclast. I have not started as I wanted to do research. I am not one who likes to take medicine without knowing as much as I can. I am glad I joined this group and the information provided by everyone is very beneficial to a new comer. I am still researching but what I have read so far I am not inclined to take the reclast. I hope to find soon the right medicine/treatment for me.

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@bmrus why are you inclined not to take the Reclast? Are your DEXA scores bad enough to get you an anabolic like Forteo or Tymlos, or a medication like Evenity? It is better to start with one of these unless your osteoporosis is very mild, in which case you could talk with an endocrinologist about whether you can try more holistic methods first or should do Reclast.

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@awfultruth

@windyshores It has finally become clear to me that the dosages of the drugs available are not chosen based on what's good for the individual. Instead the dosages reflect economic interests and what "they" think will work best for all women with osteoporosis assuming that treatment will not be individualized and nuanced.
For instance, as long ago as 2002 they did a study showing you get almost identical results with Reclast dosages ranging from 0.25 mg to 4 mg with dosing schedules varied depending on the size of the dose. By dosing 0.25 mg at 3 months they accomplished the same bone benefits as 4 mg at one year. So a total of 1 mg in a year got the same result as 4 mg in one year. But what was desired by the various researchers and experts was it seems to improve compliance and convenience and reduce cost and produce the greatest good for all. Assuming of course that there is no health impact of using 4 times more of a drug than necessary to produce the same effect.
"Women received placebo or intravenous zoledronic
acid in doses of 0.25 mg, 0.5 mg, or 1 mg at three month intervals. In addition, one group received a total annual dose of 4 mg as a single dose, and another
received two doses of 2 mg each, six months apart.
Lumbar-spine bone mineral density was the primary end point. There were similar increases in bone mineral density in all the zoledronic acid groups".
See https://www.nejm.org/doi/pdf/10.1056/NEJMoa011807?download=true
There is a paywall for the New England Journal of Medicine (NEJM) but you can create a free account and get 3 free reads a month. That's how I got this paper.
I there are one or two more papers related to this that I have to finish checking out.
Thanks Windy for all your input on this forum.

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Very interesting .... makes total sense to me who weighs in at 112 lbs.
Thank you for this info.

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@windyshores

@bmrus why are you inclined not to take the Reclast? Are your DEXA scores bad enough to get you an anabolic like Forteo or Tymlos, or a medication like Evenity? It is better to start with one of these unless your osteoporosis is very mild, in which case you could talk with an endocrinologist about whether you can try more holistic methods first or should do Reclast.

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I'm on wait list to see endocrinologist. I'm reluctant because I want to know more about the drug and more about what I can do to help my osteoporosis without drugs. I am scheduled to start aquatic therapy due to gluteus medius tendinosis and hip bursitis. I am in the research phase of what is best to do now and for my future health. I am not aware of all the medications for osteoporosis but this will be discussed with endocrinologist once I get an appoinment.

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@bmrus

I am new to the group. I had a hip replacement 5 months ago and the surgeon told me after surgery that he was sure I had osteoporosis and to contact my primary for testing. I had not had a scan in two years, so one was scheduled along with an MRI due to hip (good) and back pain. Sure enough I have osteoporosis and was recommended to start reclast. I have not started as I wanted to do research. I am not one who likes to take medicine without knowing as much as I can. I am glad I joined this group and the information provided by everyone is very beneficial to a new comer. I am still researching but what I have read so far I am not inclined to take the reclast. I hope to find soon the right medicine/treatment for me.

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bmrus,
I had a hip replacement last year, but I knew that I had osteoporosis when I had it. I was already on Evenity.
The Evenity gave me significant improvements in spine and left hip. The right hip is no longer a concern as it is titanium. 🙂
After a year of Evenity, I went on Reclast. Neither of these drugs caused me any problems with side effects.
Everyone is different.
There is a lot of information on this site. Also, get Dr. Keith McCormick’s book
“ Great Bones”. Many of us here have read it. He also does consultations.
I take some of the supplements that he sells on his website. Do they help?
Who’s to say.
I believe my improvement was primarily due to Evenity as I had been taking supplements and exercising for many years and bones continued to worsen.

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