CRPS – Is A Protocol Near?

CRPS – Is A Protocol Near?

By Ed Coghlan

For people who suffer from CRPS there may be some hope on the horizon.

Up to 50 physicians are expected near Chicago on October 22 for a day-long meeting that the CRPS community hopes results in a protocol to use ketamine to treat CRPS.

“Patients are quite desperate,” said Dr. Peter Moskovitz, a board certified orthopedic surgeon who is chair of the RSDSA. “This meeting in Chicago is important to create a real starting point in getting agreement on how to use ketamine to treat CRPS.”

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.

“Ketamine has received a new life as an infusion treatment for chronic pain,” said Dr. Moskovitz in an interview with the National Pain Report. “The meeting is attracting physicians and others interested in developing a reference protocol.”

A reference protocol is needed because Dr. Moskovitz said that the current use of ketamine is a “hodgepodge” of different physicians using it in different ways.

Ketamine was developed in 1962 and has been used widely in anesthesia. Over a half century later, it is generic drug, which poses another challenge for serious study. Because it’s a generic, there is no company interested in putting money into a clinical trial. So in a way, these physicians may be starting their own trial or inspiring one.

“It’s been used, at times very successful, for treating neuroinflammaotary pain,” Dr. Moskovitz pointed out.

The goal of the meeting is to develop a consensus. Ideally three things will occur.

  • The agreement and subsequent publication of a reference protocol
  • Provide a summary of the scientific work that has been done
  • Attract proposals for research that can, as clinical trials aim to do, study the safety and efficacy of the treatment.

“Imagine the data we can develop if we get a couple of dozen physicians around the world using the same protocol to treat CRPS patients,” Dr. Moskovitz said.

For Jim Broatch, the long-time executive Vice President of RSDSA this opportunity is important and critical.

“We hope that our faculty and attendees can agree upon a protocol to treat CRPS. The next step is to find a funder to conduct a clinical trial,” Broatch told the National Pain Report. “Ketamine works but insurers too often have refused to pay for it because deem it an experimental therapy.”

Dr. Moskovitz is optimistic that this meeting can result in a difference for how CRPS patients are treated.

“”This has a good chance at succeeding,” he said.

Patients are hopeful too. More on that in a later blog.

Here’s a link to the conference.

Here’s how the NIH describes Complex Regional Pain Syndrome.

By the way, Dr. Moskovitz is a board certified orthopedic surgeon and an active member of the American Academy of Orthopaedic Surgeons. He has achieved distinction in spine care as demonstrated by membership in the North American Spine Society.

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Authored by: Ed Coghlan

There are 20 comments for this article
  1. Colleen Holbrook at 10:43 pm

    I was born on the So. side of Chicago. I have had CRPS for 11yrs. My pain Dr. is at Rush University Medical Center. I was originally diagnosed as type 1 and type 2 CRPS. But since I didn’t have all of both he just classed it as Type 1. Dr. Lubenow has done just about everything possible to help me that when I finally decided to do the trial stimulator he was dancing around the operating room telling everyone that he was trying to get me to try it for 4 yrs. I then did the permanent one in August of 2006. But what kills me is I have been waiting for something like this since i lived there. Now a live in northwest AZ. I try as much as I can to educate drs that I meet about CPS and how important it is to treat the whole patient not just the pain. This has been called the suicide disease. Please Please find something that really works. I haven’t done the Ketamine. And that is because of so much difference in people who do it and those that won’t. We are at your mercy to help us. Please, help us get under control and someone please talk about all of this to the news channels. I don’t explain myself to anyone that I have this disease. It does not define me its what I have. So many people need more help to slow it down. It does spread and thats my fear can it slow it down or just ease the pain for a short time as long enough I don’t think will happen. I still keep my head held high. I know have it in all four limbs. and left ear in the geniculate ganglia also. Please figure out what is the best way for all of us. I feel my pain is nothing compared to some of my other friends. They need it more. Thank You.

  2. Tim Mason at 5:22 am

    To C.M. The doctors that administer vitamin C like this as well as other drugs are that do “Chelation therapy”. I worked as a compounder in a pharmacy and we made a lot of compounded products for these types of doctors. They also do implant testosterone pellets t(200mg) for males with low testosterone levels. Look around for a doctor for chelation therapy. We also prepared “end of life” IV solutions that extended peoples lives by several months.
    I would search around in your city for one of these physicians My brother had a high level of arsenic by taking to much Chinese green tea capsules. In China, they still use arsenic as an insecticide for their tea and cats in their warehouses for mice control.

  3. C. M. at 1:53 pm

    Dr Kutzner,
    Very kind of you to address all of us with CRPS/RSD.
    I have type two.
    When the doctor, an orthopedist from Boston, saw my *original x-rays & MRI he found 7 broken & fractured bones in my foot plus a pulled nerve, the one that goes from the big toe to the knee. That was a little over 8 months from injury. He said I should have been casted from toe to hip. I was given a knee brace. None of the doctors previous had found all that damage, just one fracture in the ankle.
    You see I had broken my knee badly, a tibial medial fracture & they were all concerned about that when I kept telling them that it was fine, minimally hurt, it was my foot that was extremely painful. I kept telling them that every night it would turn bright red & felt like the worse sunburn I’d ever had. That was the initial stages, then all the other signs started developing.
    I get all those blocks confused. My apologies if I stated the wrong one. I had the Stellate Ganglion Block. I remember that the doctor got furious with me for not telling him that I had symptoms of a UTI. Well I told him, that was because I hadn’t had any symptoms of a UTI. He told me to never get another SGB. So I don’t know what that was all about but I can tell you his name is here
    http://www.beckersasc.com/lists/150-pain-management-physicians-to-know.html

    Tim Mason, that is very interesting information about how you extracted the vitamin C.
    I still wish all physicians knew about it. Was it given to different kinds of patients or those suspected of having CRPS/RSD only?

  4. Dr. Kutzner at 4:16 pm

    Donna Rubinetti – What, no need, I am your servant and apologize for those “other” physicians that have allowed this to happen. Please get someone to try IV Procaine, slow push over about 15min, about 200 mg. If it works then you have a diagnosis and not a presumption and it may also help. Next, you should try ketamine. Make sure you are doing all the other stuff like high dose pregablin, mmj, tizanidine, CBT and mindfulness, etc… Remember, narcotics are not your friend. Last hope may be a DCS which should be strongly considered if everything else fails. With respect and in a real way, love you.

  5. Donna Rubinetti at 10:19 am

    I would like to say a belated thank you to Dr. Kutzner. You obviously have a wealth of knowledge. I wish I had learned of your treatment suggestions sooner. I did not mean to be critical. I wish I could have had an evaluation from you. Im sorry if I have offended you. I am just another desperate CRPS patient who wants her life back.

  6. A. Guthrie at 4:54 am

    Ketamine has been the only effective treatment for my RSD/CRPS. It was my last resort. It got me out of a wheelchair, bedridden for 3 years with just one high dose infusion. When done correctly they have proven safe and completely effective. I am 100% for ketamine and think dosage varies patient to patient.

  7. Dr. Kutzner at 7:57 pm

    Apologies in advance for being succinct and seemingly crass; I am neither but I do not do well on this NPR forum. Everyone has an opinion here but I don’t get paid for opinion, but instead, evidence based medicine.

    Let me answer some of your comments:

    Donna Rubinetti, and others — CRPS 1 and RSD or any sympathetically mediated pain IS EASY TO DIAGNOSE – IT BURNS, HAS INTENSE ALLODYNIA, AND DOES NOT FOLLOW A DERMATOMAL DISTRIBUTION. The problem, the real problem, is the age old one of greed and indifference: All pain patients should be referred to a truly integrated multidisciplinary pain clinic within weeks or a few months of onset. These clinics would do a block. IF THE BLOCK WORKS THEN THAT IS A DEFINITIVE DIAGNOSIS and possibly a cure. Bottom line, where ever you are at with your disease you should get a block to diagnose it, perhaps you’ll get an extended response. These are extremely safe blocks.

    C. M. — Your UTI had nothing to do with a temporary sympathetic block. That would be a real stretch of reasoning unless it was an incidental bladder puncture but even then highly questionable. Most importantly is did the block work, if so it was diagnostic, one way or the other.

    Dr. Mark W. Helfand — That is the same old argument and impedes evidence based medicine. A BioPsychoSocial model for all pain and addiction issues has a very long evidence based record. It is now that someone will say what about rural area’s? What about them? Nearly 80% of this problem is found in the urban population. Besides, how hard is it to find an interventionalist, a psychologist, and a physical therapist willing to work with each other. From my point of view it is all excuses and the only people suffering for it are the patients. PCP’s must get out of the pain management business or get into it as a discipline.

    Tim Mason — Initially RSD with gangrene but the small sympathetic microfibers are the first to go then all the surrounding tissue which is then a nociceptive type of pain. Burning paid is the obvious symptom. It is not seen without microfiber, c-fiber, sympathetics, whatever you’re into calling it, involvement. The only other exception is myofascial disease where the blood vessels and fascia are squeezed into strangulation of surrounding sympathetics, i.e. try fibromyalgia also.

    All others — ketamine is an nmda antagonist and works, titrate to effect that is your protocol. But for most ketamine only helps a little. IV procaine works like a sympathetic block but only lasts a few minutes. There are many things that help a little like anticonvulsants, ketamine, compound creams, e-stim, myers cocktails with high Vit C, and pot, maybe some others I can’t remember right now. No matter what, you should get a sympathetic block or IV procaine to diagnosis your CRP or RSP. From there you will have options. Ultimately a DCS or sympathectomy would be last choices.

    Also, just to get the word out: the next time you know someone who develops shingles get them a block immediately. BURNING PAIN! The virus will go hide, the lesions and rash dry up in a day or two, and the chance of PHN is about zero. Of course antivirals, vaccines, and get the patient out of the PCP’s care.

    Thanks for hearing me out but please don’t think I have the time, or inclination, to provide you a fellowship on pain mgmt during this forum. Trust me and/or look it up before you become another naysayer propagating the same problems I am pissed off that you all have to live with. It is wrong. It does not follow the Hippocratic Oath nor the science we physicians swear to. My apologies for my colleges and all the unnecessary suffering. It is an abomination!

  8. Tim Mason at 6:02 pm

    Vitamin C can be given by IV if it has been “free based”. When I worked in a compounding pharmacy I would free base 10 kg of ascorbic acid (vitamin C) that was extracted from yams. It is the purest form of vitamin C you can get. It was expensive though. We made the free base form and filtered it under pressure (all sterile and in a suitable hood fully gloved and in sterile gowns.) We filtered it into 75ml vials and sealed them with an aluminum closure and septum. I am not sure of the dose, but approx. 8ml was mixed in an iv bag of ringers. and given to the patient.

  9. Donna Rubinetti at 5:53 pm

    I wish I had had the option of the Sympathetic nerve blocks. My symptoms did not present as the obvious CRPS symptoms. I had fallen on icy steps and attempted to break my fall by grabbing on to a railing. This resulted in an overstretch in of nerves in the brachial plexus area (armpit to be specific). Multiple and various diagnostic tests were unremarkable. There was no discoloration, sweating, extra bone or nail growth. There was just stinging, burning pain and severe allodynia in the armpit. Three years later I was diagnosed with RSD by my rheumatologist. So it’s not always easy to prevent CRPS. Now it’s spread to (almost) full body. I pray that ketamine works for me. We need compassion, not judgment.

  10. C. M. at 2:01 pm

    I agree with Dr. Kutzner. Why not try to prevent it in the first place?

    My sympathetic block was done 6 months to the day of injury. Too late. It (the block) actually caused a UTI as well. I was told to never get another (by a top doctor). At that point CRPS was ”suspected” but still not diagnosed. *sigh*
    I have heard & read that high dose vitamin C actually does wonders in the initial stages of CRPS/RSD.
    I would have willingly taken high dose vitamin C. It is easily available & inexpensive, anyone can get it, without a prescription.
    I sure as heck knew something was very wrong in the initial stages but being a mere mortal had never heard of CRPS. I had every ‘sign’ there is yet it took almost a year before a doctor recognized the signs diagnosed it as CRPS. That was about the sixth doctor I saw regarding the intense pain.
    Too late for me but why aren’t Emergency Departments & Orthopedic Doctors educated on the signs of CRPS? Most of us have a significant enough injury & see one or both of these type of doctors. They should be the front lines of diagnosing CRPS but most have, sadly, never heard of it.
    When a patient keeps insisting that something is wrong many doctors just think we are being hysterical or extreme. Patients, us mere mortals, do in fact know our bodies best & when something is terribly wrong, yet trying to get a doctor to take one seriously is like talking to a brick wall at times.

  11. Dr. Mark W. Helfand at 11:56 am

    Hey, Dr. Kutzner, your argument sounds good but it’s next to impossible to enact in real life. I agree that early sympathetic blocks are worth trying. However, the problem is not with the block, it’s with doing it early. Diagnosis of CRPS is one of exclusion. There is no specific blood test or X-ray that can confirm the condition. Studies have shown that most cases of CRPS aren’t diagnosed until 6 to 12 months after the onset of symptoms. That excludes your treatment protocol in most cases. And after 3 to 6 months, the treatment isn’t near as effective. I should know, I’m a doctor and a patient for 15 years.

  12. Tim Mason at 11:41 am

    I agree Dr. Kutzner, Can this not be compared to gangrene in a limb extremity. From the photos I have seen of CRPS limbs, they are similar in onset. just as painful but the tissue does not decay with CRPS. Just a thought.

  13. Dr. Kutzner at 9:16 am

    What happened to PREVENTING CRPS? We have known, for decades, that if you do a sympathetic block BEFORE CRPS gets established more than ~ 3months that you can CURE it or at least lessen it.

    Now don’t come back at me with a bunch of excuses and rationalizations how local anesthetic sympathectomies don’t work. When you develop a sympathetic mediated pain get away from your PCP and get a block. Repeat it if necessary. The benefits are so very great versus the risks it is inhumane not to try it before chronicity sets in. The majority of you out there that have any form of CRPS would not have it now if you had received a block within a few weeks of onset.

  14. Geo Sims at 8:54 am

    Thank you for your comment, and we’re sorry that you feel that way. We certainly believe that RSDSA has CRPS and RSD sufferers’ best interests at heart, and certainly support a path toward insurance coverage of another potential treatment that may help many. We have yet to see any protocol that would “force” those who can’t use it, to use it.

  15. John S at 8:43 am

    I’ve heard nothing good about ketamine other than – it’s not an brand name OPIATE.

    Another PC drug that the media doesn’t know about

    Thanks

    jjs

  16. Donna Rubinetti at 8:38 am

    I pray that this event is successful in determining a productive protocol. I have had eight infusions so far and have had no relief. I have never experienced this level of pain. My treatments will continue (minimally) throughout the end of the year. I have always been a high functioning professional woman. This disease is spreading and has rendered me to barely getting through the days. Please, please help.

  17. Terri Lewis at 6:57 am

    Part of the problem is developing a protocol for infusion of ketamine lies in the definitions used for infusion – typically reserved for compensation physicians for the administration of cancer drugs or antibiotics within a hospital setting and under supervision; and the lack of clinical trials for this medication.
    In recent years, the discovery of ketamine’s effectiveness for analgesia and depression reduction in PTSD syndrome has carved out new interest in this medication for treating one of the most difficult of pain generating syndromes.
    Hats off to these physicians for responding the call by RSDSA. If this systematic inquiry produces information that moves the treatment of this syndrome forward, it will take real advocacy to insist that CMMS compensates care providers for the use of this medication at costs that are far more reasonable that the current compensation schemes in play.

    KETAMINE costs are reported to range from 350 to 1500 per infusion in an outpatient setting. They are not covered by insurance except under certain conditions of hospitalization. Costs have been reported that are much much higher. The current billing codes are reflected as –
    Code Item
    99213 Outpatient E&M Established Patient
    96365 IV Infusion therapy/P
    96366 IVInfusion therapy P
    93041 Rhythm ECG 1-3 leads
    J3490 Ketamine, IV
    J2405 Ondansetron HCL Injection
    J2765 Metoclopramide HCL Injecton
    J2250 Injection Midazolam Hydroch
    J7030 Infusion Normal Saline
    36000 Intro Needle/Intracat

  18. Bonnie Collins at 3:46 am

    That sucks for those who can’t use it and will be forced to! It also sucks for those it kills! National pain you are not on the patient’s side. You have cranked in bed with the “Givernment”. I’m sir you will not allow the dis sent to be posted but at least you know how some of us feel about you!

  19. Tim Mason at 3:40 am

    I am really glad to see this. I posted a link in an earlier thread this year from Chemical and Engineering News that talked about several drugs that were being brought back to the medical research laboratory. Ketamine and Cannabis were the two top projects. I was prescribed Ketamine in two compounded formulas. The products, when rubbed into the neck went to work immediately. Not only did it reduce my pain but it had a tremendous and long lasing calming effect. The anti-anxiety properties of Ketamine are well know. IMO Ketamine is to pain and anxiety as aspirin was to a headache. 100% effective.