1. < Neuropathy

Reclast recommended for osteopedia. I have PN (likely hereditary).

Posted by bethiemae @bethiemae, Nov 4 8:55am

Anyone with PN taking Reclast treatments fot Osteopedia or Ostepoerosis? I am being given a choice between Reclast and Prolia. Prolia can cause/exasperate PN, so Reclast is my only option. Experiences?

Interested in more discussions like this? Go to the Neuropathy Support Group.

bethiemae | @bethiemae | Nov 5 10:50am
In reply to @centre "I've been on Prolia for 5 years- what is the "rebound" your MD sees?" + (show)
@centre

I've been on Prolia for 5 years- what is the "rebound" your MD sees?

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A possible side effect of Prolia is neuropathy or aggravated neuropathy. I
already have neuropathy and can't chance it worsening.

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1 reply
centre | @centre | Nov 5 10:54am
In reply to @bethiemae "A possible side effect of Prolia is neuropathy or aggravated neuropathy. I already have neuropathy and..." + (show)
@bethiemae

A possible side effect of Prolia is neuropathy or aggravated neuropathy. I
already have neuropathy and can't chance it worsening.

Jump to this post

Fosomax did that for me- felt like 100,000 bees buzzing under my skin below the knee on one leg.
Fortunately it went away after stopping the Fosomax.

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windyshores | @windyshores | Nov 5 10:58am
In reply to @centre "I've been on Prolia for 5 years- what is the "rebound" your MD sees?" + (show)
@centre

I've been on Prolia for 5 years- what is the "rebound" your MD sees?

Jump to this post

@centre Prolia rebound is well-known. During Prolia osteoclasts (that break bone down) go dormant and when you stop they come rushing back (simplistic explanation!). Bone density goes down and fracture risk rises sharply. Some people on this forum have had multiple fractures after going off without follow-up meds. Reclast is the best way to manage rebound, according to my doctor and other resources.

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dhamil | @dhamil | Nov 5 9:39pm

I didn’t know Prolia could cause/exasperate neuropathy . I’m taking it and I have neuropathy. Did your doctor tell you this? If you read it somewhere could you tell me where. I’d like to educate myself on this and also show it to my doctor.

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bb0753 | @bb0753 | Nov 6 7:34pm
In reply to @bethiemae "Yes, I have Peripheral Neuropathy. Still being tested, but likely hereditary. I did take Fosamax a..." + (show)
@bethiemae

Yes, I have Peripheral Neuropathy. Still being tested, but likely hereditary. I did take Fosamax a couple of years ago for Osteopedia, but had some dizziness and quit taking it. Bone density has worsened, so I am being told I need to have Recast IV.

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Check out FB group Osteoporosis Natural Remedies. There are many adverse side effects of these medications including sudden broken femur bones, dental jaw problems. Notice the warnings on TV commercials of serious side effects.

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windyshores | @windyshores | Nov 7 5:48am

@bb0753 atypical femur fractures and jaw necrosis are relatively rare and more likely to occur for cancer patients on higher doses, according to what I have read ("Great Bones," for instance) and my own doctors. That said, there are exceptions always.

I think it is very reasonable to consider natural approaches for osteopenia or even mild osteoporosis.

However, for some of us, who have more serious disease, the side effect of NOT doing medications is fractures. I have 7 spinal fractures and am on this forum to warn folks that there are no warning signs- and that they are painful and disabling. I will endure quite a few side effects to prevent more.

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1 reply
pbrowni25 | @pbrowni25 | Nov 8 12:26pm
In reply to @windyshores "@bb0753 atypical femur fractures and jaw necrosis are relatively rare and more likely to occur for..." + (show)
@windyshores

@bb0753 atypical femur fractures and jaw necrosis are relatively rare and more likely to occur for cancer patients on higher doses, according to what I have read ("Great Bones," for instance) and my own doctors. That said, there are exceptions always.

I think it is very reasonable to consider natural approaches for osteopenia or even mild osteoporosis.

However, for some of us, who have more serious disease, the side effect of NOT doing medications is fractures. I have 7 spinal fractures and am on this forum to warn folks that there are no warning signs- and that they are painful and disabling. I will endure quite a few side effects to prevent more.

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I'm doing meds but fractured my hip in Feb.
Now I walk daily and move to weight training and it's great. MOVE IT OR LOSE IT!

My motto with past cancer, Peripheral Neuropathy ICD implant and macro degeneration and the list goes on...
Be positive and keep mmoving.

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1 reply
windyshores | @windyshores | Nov 8 4:07pm
In reply to @pbrowni25 "I'm doing meds but fractured my hip in Feb. Now I walk daily and move to..." + (show)
@pbrowni25

I'm doing meds but fractured my hip in Feb.
Now I walk daily and move to weight training and it's great. MOVE IT OR LOSE IT!

My motto with past cancer, Peripheral Neuropathy ICD implant and macro degeneration and the list goes on...
Be positive and keep mmoving.

Jump to this post

@pbrowni25 what meds were you on when you fractured?

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pbrowni25 | @pbrowni25 | Nov 8 6:03pm

Lisinopril (now off) Eliquis Rousatitan (now off) Allopurinol Metoprolol....sine then stated Cymbalta (Neuropathy) and Trazodone (sleep).

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1 reply
windyshores | @windyshores | Nov 8 6:23pm
In reply to @pbrowni25 "Lisinopril (now off) Eliquis Rousatitan (now off) Allopurinol Metoprolol....sine then stated Cymbalta (Neuropathy) and Trazodone (sleep)." + (show)
@pbrowni25

Lisinopril (now off) Eliquis Rousatitan (now off) Allopurinol Metoprolol....sine then stated Cymbalta (Neuropathy) and Trazodone (sleep).

Jump to this post

@pbrown I thought you were referring to bone meds! Do you know of any connection between the meds you listed (not bone meds) and fractures?

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