Unfortunately, a "drug holiday" can't be taken after taking two or more Prolia injections. Mum had two. Take one shot and you can get away with not taking another, take two or more and you're stuck.
Many doctors have no idea about the "rebound effect" upon discontinuation, despite Amgen, the company, acknowledging that a relay protocol must be undertaken.
Surprised (though not really) that GP's, and even Endocronolgist's, have no idea about the rebound effect and how to safely get patient's off these bio-phos drugs to prevent the very real, and acknowledged threat, of their spine or femur spontaneously snapping from something as simple as moving in bed.
Mum has bone/teeth growing behind her teeth. She has bone growing on top of bone on both feet. Her feet burn like fire. Electricity-like sensations run thru her feet and face. Her face/cheeks also get blood red. She has ice water and face cloths by her side 24/7 to try and cool her down. Ice packs and wet towels.
She cannot stand the water from the shower touching her skin. It hurts to shower. My father showers her as she sits on a chair.
She's had multiple, spontaneous vertabrae fractures. Not because of Osteoporosis, because of a drug given to her to slow it down. A drug that was given, then ceased, without a relay protocol. A relay protocol would probably not have been tolerated anyway. Oral and infusion therapies are often used to relay off the drug.
The rashes and sores on Mum's scalp and skin, as well as intense itchinesss, at times, is unbeara ble. Anti-histamines do little to help. The skin issues started around the mid-point of the PPS injections. We thought it was a reaction to those. We didn't even think of Prolia being the culprit, as her GP told her it was just a routine treatment. Easily tolerated.
It wasn't until she was hospitalized with gastrointestonal issues that we realized what was going on. All tests were clear. She had symptoms of some potentially horrible things, but she was essentially healthy.
Most patients have the same story. All of them go thru a laundry list of tests because of their ongoing symptoms, and when the tests come back clear, doctor's start to allude to it all being psychological. It couldn't possibly be Prolia...
The stuff is poison. I wouldn't inject a rat with it.
In layman's terms, Prolia builds bone on bone, which is why she has foot deformity and teeth shards growing behind her teeth. When stopping the drug, that "extra bone" can be sucked back in too quickly, therefore snapping the actual bones.
Thing is, if, like Mum, there is such a myriad of reactions to it, a relay drug only continues the torture. She was never told of the side effects, or of the relay protocol. Only that she has Osteoporosis and this drug will slow that down. She has never had Cancer. Osteoporosis only.
There is a FB group with hundreds of other horror stories. I wish doctors would look at the evidence in front of them, trust the patient, and not blindly defend a drug or a drug company. Listening to a patient, sadly, is something not too many doctors are willing to do. Osteoporosis is often age-related, but I know many active people who were fit and relatively healthy prior to Prolia, aside from a diagnosis of Osteoporosis or Osteopenia, only to be destroyed by it. It only takes one decent doctor to stand up and do their own research, speak to people who have had this drug injected into them, not treat them like they're insane, and make some noise. It's easier to turn a blind eye and tow the line. Until it happens to them, or a loved one, well, that may change an attitude...I hope.
No doctor should be able to inject Prolia into anyone and not give the risks of the drug to the patient, or, scarily, not even know that a relay protocol MUST be undertaken to get off it. There are many, many doctors, all over, telling patients they can stop it cold turkey. That's alarming.
Mum did see a lovely Podiatrist about her feet. He diagnosed nerve damage, caused by Prolia, that may or may not resolve over time. He was well aware of Prolia, and he had nothing good to say about it.
Anyway, I have derailed the thread with a digression of sorts. Back to PPS and Paradigm.
Thanks, everyone xo
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