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

by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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8 Responses to “Side Effects of Neridronic Acid – Neridronate”

  1. Julie Says:

    This is Julie from the phase 2 neridronic acid trial. At 9 weeks post infusion I relapsed, as we were only given partial doses. At 19 months post onset, I travelled to Verona, Italy where I received 400 mgs. The second course of the medication gave me no side effects. None. Which is normal. The second course didn’t have the same profound effect on the pain as the first course. What it did, was to heal the osteopenia in my CRPS foot and heal the stress fractures completely. I now have no sign of osteopenia. I still have the neuropathy, heat, pain and swelling. The pain isn’t as intense. They told me in Italy that CRPS causes bone marrow edema, which the neridronic acid cures. So now, I run 5 miles per day, but only with Vicodin. I still use it to be functional and to sleep. I completely disagree with those who say that opiods don’t work. If I even tried to walk 1 mile without opiods, forget it. I can barely move. After the opiods, I can run up to 7 miles. I still get my bad, hot and painful flare every night around 7 pm. My new medication that I am working up to 40 mgs is called Memantine. When I increase my dose, I get a huge decrease in pain, but 5 days later the pain is just as bad. Then I increase the dose by 5 mgs and it goes down again. I’m only at 15 mgs. but I’m hoping that the pain free days will become longer. I have been studying the NMDA antagonists. I have a strong suspicion that nericronic acid is a NMDA antagonist and that’s why it helps initially with the pain, but then the effect fades. There is a phase 3 starting with the full 400 mgs and no placebos. I strongly recommend CRPS patients try it.
    Thank you

    • Nancy Sajben MD Says:

      Thank you for your experience Julie.
      CRPS is different in everyone.

      Relapses are the worst part of CRPS, sorry that happened to you.

      Memantine is excellent – it blocks the NMDA receptor, as does ketamine. I generally take dose to 55 mg/day.

      Movement, activity is essential, no matter how, just begin, even if it requires opioid. It may be one of the most important things to do, but we have to look at everything that helps.

      Opioids – very difficult subject because they increase pro-inflammatory cytokines in brain, which increase pain.

      Taking opioids and doing nothing is a downward spiral that is nothing but grief. Have a plan, stay active, use the power of the brain to dissociate from pain, meditate, use guided imagery, medication, P.T., and try to find as much joy as possible to turn this thing around.

      You are doing many things that help. That’s important.

      Neridronic acid is a bisphosphonate. I’ve posted on them several times in the last few years.

      • David M Says:

        For Nancy or anyone who may know, what if any info can you provide me with, that relates to combined IV treatment will neridronate and ketamine? I’m not referring to both drugs via one IV ;), rather…do you know of the potential for greater success with individuals who get both IV protocols either during the same tine period or within a few months of one another?

        I’ve long been a candidate for IV ketamine, however, the insurers have done a fantastic job of delaying the treatment for any number of reasons. I may be able to get it very soon though…but I’m curious as ketamine efficacy during or near a nerdridronate protocol.

  2. crpskidz Says:

    My son’s preparing for his neridronate treatment in the states. I’m excited and yet nervous.

  3. David M Says:

    Hello all…thank you to everyone who’s commented (very valuable input) and shared experiences (also very valuable!). I am about to begin the trial treatment with neridronic acid for CRPS. I developed CRPS as a result of severe nerve damage in my groin from a failed R inguinal neurectomy…the fallout was significant, causing a multitude of pain symptoms that spread through my genitals, hip, thigh, down to my foot, etc. Over the past 11yrs, I’ve battled with the idea that this is a condition which I may never be able to suppress or recover from to regain my former life without pain…so I have decent hopes that this treatment can yield some reward.

    I’m encouraged to read the words “endocannabinoid system” above…because that is the focus of the field in which I’ve been studying and working for over a decade (I provide consults to individuals, with a focus on nutrition and achieving wellness through use of botanical extracts and supplements). I’m a former classically trained chef with additional nutrition education, so following my 2004 work injury, I utilized my knowledge to focus on the health and wellness benefits of exogenous cannabinoids as seen in treatments that utilise cannabis as a nutritional source. I’ve been blessed to have my work be evaluated and my methodology be supported by individuals like Dr Courtney and Dr Allen (ICRS published researcher). There isn’t nearly enough focus being given towards caring for and maintaining the wellness of the ECS…in the medical community or elsewhere. I’m happy to see this come up more often in conversation recently about CRPS, as it is becoming more of a proper and justified talking point.

    I look forward to sharing my treatment results with you all. It is important that we can come together and share experiences!

  4. Heather Kelly Says:

    My daughter is 15 yrs old and has had foot severe foot pain for three years, we have been chasing this for awhile. She was an Irish dancer and MRI showed previous fracture and stress reaction. Last year we received the CRPS diagnosis, did every natural therapy first and then reluctantly tried Gabapentin, up to 1400mg no change in pain and negative side effects of flu like symptoms with severe vomiting. She is off the medication. I recently have read about the Neridronate infusions in Italy because the Doctors are nice people here but have said point blank, there is no cure. Not sure where to turn to next but the internet for information. Would love to know if Neridronate is a step in the right direction to research our options?


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