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?

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No I don't and nothing from my docs.
Here to learn.

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@pbrowni25

No I don't and nothing from my docs.
Here to learn.

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Just wanted to clarify @pbrowni25 because your post back there said you fractured while on meds, and some may think that osteoporosis meds caused the fracturs, but you were not on osteoporosis meds, is that right?

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That's correct. I did not say and I was not on meds for Osteoporosis. I just wanted to see if anyone saw one of my meds I was on maybe they could relate.

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Going back to a questioned connection between Prolia and PN, all I can find is the following article which says there's no evidence that Prolia causes or worsens PN. From personal experience I have chemo induced neuropathy (4 years). I have osteopenia which would probably not be treated, but I am on Letrozole which can cause bone loss. Thus I've been on Prolia for four years. I've not noticed any worsening of my neuropathy after starting Prolia. I'll be transitioning off Prolia with Zometa in a few weeks as I'll stop taking the Letrozole at the end of the year. Hopefully I'll tolerate the Zometa, and life will improve without these drugs. Here's that link.
https://www.ehealthme.com/ds/prolia/peripheral-neuropathy/

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Hi all,

This is the 80 year old Vietnam Veteran checking in as I have severe PN that is taking over my whole body allegedly. I have been working with an organization that provides various treatments like tens unit on feet, shoulders, and back, infaret ;ight on hands and feet, chiropractic, vitamin shots in feet, and some other treatments. So far it does not appear to be. helping much in any way, other than an hour or two of some relief.

I see my VA doctor this week, but they have not come up with anything that works for me since I am so allergic to opiates and most meds!! I have tried all kinds of snake oils that don't work and many won't refund my money as per their initial and supposed gurantees! Looks like one of the largest rip offs in the medical industry.

My neuropathic doctor thinks I should try sauna therapy. I am just wondering if anyone out there has tried this therapy? I know my time is limited now that I am in the 80,000 mile limited warranty so really hoping to at least find some kind of relief to all this horrendous body inflammation that has extended into my groin area, all around my waist, hends to shoulders, feet up to my waist, and now a bit in and around my head in itching ears, watery eyes, constant sinus drainage!! Yes, I know just wishful thinking I am sure!!??

Wishing everyone a very happy holiday season and keeping positive that somewhere and somehow someone will come up with some kind of pain remedy or something to at least hault the spread of this crazy and wild medical condition. Semper Fi.

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This is my experience with Prolia, which I took in January of this year (2024) for osteoporosis. I am 71 and I have non diabetic neuropathy.

While it didn’t seem to affect my neuropathy so much, it did cause immediate (1 week) and massive infections in my body, in 3 different locations. The first being a very enlarged lymphoma in the middle of my back, the size of half a soft ball. This had to be drained and then surgically removed. I was on 2 separate antibiotics for over 30 days before the infection was cured. The second was a 4 week sinus infection which again took another round of antibiotics to cure. (I am on an allergy shot regimen, and haven’t had a sinus infection in over 10 years). The third was inflammation & burning in the soles of my feet at the base of my toes called Metatarsalgia. This is still a problem to this day, & a form of neuropathy.

After the fact I went on Mayo Clinic’s website and found the following concerning the side effects of Prolia.
Elderly patients are more sensitive to the side effects of this medicine than younger adults. Prolia® may increase your risk of developing infections. It also can cause muscle or bone pain, pain in the arms, in the lower back, bottom, upper leg, or hips. I had all of these. But worse than these, but not one of my issues is that this medicine may increase your risk of developing fractures of the thigh bone.

So while Prolia may be a great treatment for osteoporosis for some, it was 6 months of doctor visits, antibiotics and surgical treatments for me. My PCP took me off of it immediately, (though it effects last for 6 months). I recommend that you look up side effects of Prolia on the Mayo Clinic website and read for yourself the myriad of very disturbing side effects with this injection, especially if you are a senior. Good luck in your decision.

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