Side Effects of Neridronic Acid – Neridronate


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Neridronate

Neridronic acid

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This is a long response to detailed comments from Julie who had a reaction to the neridronic acid protocol for CRPS.

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The clinical trial on neridronic acid is extremely important and unique. It is important because it does not just cover symptoms, it actually may put CRPS into remission.

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If I had CRPS, I would not hesitate to accept short term side effects if I thought I could get long term benefit, even possibly remission. We need this study. It will not be available for anyone unless many enroll in the double blind study and hopefully soon so that results can be submitted to the FDA for approval.

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Please read her comments first, at the end of my post. And then my comments below.

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And because neridronic acid relates to bone metabolism, much later I will mention an area of research that is likely to be be valuable because it is the largest receptor system in the body, the endocannabinoid receptor system, the body’s own cannabinoid system.  Two ideas from Raphael Mechoulam, professor of Medicinal Chemistry at the Hebrew University of Jerusalem in Israel are keenly interesting:

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The Skeletal Endocannabinoid System

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The Entourage Effect

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Glia make one of the cannabinoids in the brain, and glial research is where I suspect some of the best research will come

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Hopefully these ideas will stimulate  research.

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In response to Julie, I wrote:

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Julie, I am so sorry to hear of the difficulty you had to go through for such a long time. And relieved that you got through it. I and, I’m sure everyone else, thanks you for volunteering. We will all benefit. And we all hope that if any reaction is to occur, please let it be rare. It appears that yours is rare.

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I know everyone is with you, and we bring all our hopes for the unknown. No one has the answer of what to do with intractable pain of any kind, not just CRPS pain. We must, MUST, begin to do more research on intractable pain in humans. Neridronic acid is an important beginning to look at a new mechanism.

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CRPS has, in some people, escaped every known rational approach to treatment. Neridronate may be the best thing we can get. It takes time to learn how new medications work, and they have chosen wisely, I am sure.

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Be assured, I think good minds are working on the best. But it is unknown territory.  Numbers are needed – CRPS can be very dynamic. Flares and remissions wax and wane, so long term study must be done.

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We all see patients after CRPS flares and there is nothing more to offer. Not one thing. We urgently need something that works. We are hoping neridronic acid will be that rescue.

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Will remission last 12 months or 3 months or less?

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What are long term risks?

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How often could it potentially be given, or will remission really last for years in some? We all need to see numbers.

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Huge hopes are on this drug.

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We must balance hopes and fears.

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We recognize it is a new drug for a new purpose. We hope this research will drive many more studies on CRPS and/or intractable pain.

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Julie, thank you for allowing others to see details. It may help other volunteers to set aside time to recover any post infusion effects, if needed. Hope for the best, plan for the worst is the saying.

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No one yet knows how good the potential is for duration of effect. Remission could potentially be total, in some. How many?

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We are all learning how to treat chronic intractable pain.

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Skeletal Endocannabinoid System

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The highly decorated scientist who discovered THC and the body’s endocannabinoid system, Raphael Mechoulam, professor of Medicinal Chemistry at the Hebrew University of Jerusalem, recently mentioned the SKELETAL CANNABINOID SYSTEM in a 2014 documentary on his discoveries.

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The cannabinoid system interacts powerfully with the immune system in ways not yet studied. Why does your CRPS immune system affect the skeletal system and create pain?

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Cannabinoids are anti-inflammatory, analgesic, healing. The body makes its own. We need to study the biggest receptor system in the body. It is a gaping hole that is left out of existing work on the immune system.

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And how much are glia and our innate immune system in CNS— how much are they studied?

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Please let there somehow be funding for many studies on humans – but let’s begin one study, guided by Distinguished Professor Linda Watkin’s lab. She is the only scientist who is doing translational work from  basic research in the lab to humans.

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Professor Watkins has the best clinical solution I have seen: IL-10 has remarkable potential to bring your pain to zero for 3 months or more at a times. Your brain makes it. It is *the* anti-inflammatory cytokine. Her lab has been the world leader in glial research. Where is the funding for what may be the most important area of work for intractable mood disorders and treatment resistant depression?

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Glia

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How do hundreds of now usable drugs create pro-inflammatory cytokines thus make more pain or more major mood disorder?

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And which of these hundreds of drugs on our formulary reduce inflammatory cytokines?

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What is the role, if any, of some of the medications used by rheumatologists to dampen the hyperactive immune system in autoimmune disease? Risks, but possible gain. We will never have all the answers. ALL the answers for everyone is hard to imagine.

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How do hundreds of existing drugs affect the balance of CNS cytokines?

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Skeletal Endocannabinoid System – see Raphael Machoulam’s lab in Israel. May be critical for CRPS and for osteoporosis in seniors.

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Mechoulam’s lab would bite at the chance to get funded to work with the Italian and USA CRPS study.

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Julie — I am heartened that you may be able to see Professor Ott who may be one of the foremost researchers on bone metabolism if not number one.

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I posted three times on bisphosphonates last year and hope they are a good review for others.

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The Entourage Effect

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Mechoulam also has an important concept that probably applies to my method of trying to modulate these powerful intractable pain syndromes.

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Simple concept – brilliant:

The Entourage Effect. Drugs are like politicians. A famous politician may walk unrecognized, but when you surround him or her with many people, even of lesser status, the politician has a far more powerful effect.

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I don’t know how you guys do it.

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Respectful best wishes.

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I know some of you ignore this, but I have to repeat:

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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This material is not a substitute for medical advice, diagnosis or treatment provided

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