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.

Is PN peripheral neuropathy? I have paresthesias and a diagnosis of neuropathy and Reclast has not bothered me. Do you have GERD? Are oral bisphosphonates and alternative for you? Glad you aren't doing Prolia in your situation. (My doc doesn't use it at all...)

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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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@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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@bethiemae do you have an endocrinologist? Resources like my doctor, "Great Bones" by Keith McCormick and Dr. Ben Leder's "Combinations and Sequencing Approaches to Osteoporosis" recommend starting with a bone builder like Tymlos, Forteo or Evenity before doing a bisphosphonate like Fosamax or Reclast.

But insurance likes the cheaper bisphosphonates and PCP's often prescribe them as "front line." If your DEXA scores are worse than, say -3.0 perhaps a bone builder would be better to start. Ask your doctor and an endocriinologist might be helpful if you don't already have one.

If your scores are okay then either natural approaches, Reclast - or both might help. Make sure to hydrate and you can ask for a slower infusion!

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@windyshores

@bethiemae do you have an endocrinologist? Resources like my doctor, "Great Bones" by Keith McCormick and Dr. Ben Leder's "Combinations and Sequencing Approaches to Osteoporosis" recommend starting with a bone builder like Tymlos, Forteo or Evenity before doing a bisphosphonate like Fosamax or Reclast.

But insurance likes the cheaper bisphosphonates and PCP's often prescribe them as "front line." If your DEXA scores are worse than, say -3.0 perhaps a bone builder would be better to start. Ask your doctor and an endocriinologist might be helpful if you don't already have one.

If your scores are okay then either natural approaches, Reclast - or both might help. Make sure to hydrate and you can ask for a slower infusion!

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In the process of trying to find out the cause of my PN, the rheumatologist found -3.1 DEXA score in my spine (lumbar). He pushed for Prolia, but I just started the fosamax this morning. I read that after stopping Prolia, you lose all the gains soon after, and Fosamax tends to stay in your bones longer? It is also much less expensive. Amgen does have a program to help pay for it though.

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@jan64

In the process of trying to find out the cause of my PN, the rheumatologist found -3.1 DEXA score in my spine (lumbar). He pushed for Prolia, but I just started the fosamax this morning. I read that after stopping Prolia, you lose all the gains soon after, and Fosamax tends to stay in your bones longer? It is also much less expensive. Amgen does have a program to help pay for it though.

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@jan64 have you asked about Tymlos, Forteo or Evenity? Your score is low enough that you might qualify if your doctor indicates medical necessity. Maybe you could also ask an endocrinologist.

Fosamax will reduce effectiveness of bone builders over time but you have only taken it once.

My doctor won't use Prolia at all due to rebound.

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My Endocrinologist gave me 2 choices: Prolia and Reclast...

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@bethiemae

My Endocrinologist gave me 2 choices: Prolia and Reclast...

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@bethiemae is it a PCP or endocrinologist? You can ask about the other meds!

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My husband has been receiving Reclast last 2 years and I take the Prolia shots last 5 years ( have radiculopathy). The Reclast is much easier- 15 min infusion, 15 min sit and chat, once yearly, IV spot sore a little for a few days. Prolia is a pain- twice yearly injections, careful days counting so they are at least plus one day from last one, but within two weeks from last one. Each year the two injection dates advance and soon interfere with trips away you might wat to take at the holidays or for vacations.
Reclast is once and done each year. I can't do Reclast as I had neurological symptoms with Fosomax, which is in the same "family" as Reclast.
I've progressed on Dexascan from Osteoporosis to Ostepenia over 10 years, still improving. Faithfully following Rheumatologist's instructions- Calcium supplement (2) daily, 30 min walk daily, eating 3 sources of Ca daily (cheese, milk, cottage cheese, dark leafy vege.). I switched to unsweetened almond milk for less sugar. Good luck!

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I didn't want to do Forteo, even though it's just for 2 years), because the medication is mailed to you twice monthly in dry ice and I travel alot to see the grandkids. I didn't want to take the chance mailings would get mixed up and not reach me, it's twice monthly injections and you can't miss them. The box can't sit out overnight, the Forteo needs to be refridgerated.

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@windyshores

@jan64 have you asked about Tymlos, Forteo or Evenity? Your score is low enough that you might qualify if your doctor indicates medical necessity. Maybe you could also ask an endocrinologist.

Fosamax will reduce effectiveness of bone builders over time but you have only taken it once.

My doctor won't use Prolia at all due to rebound.

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

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