Good question. If the CRPS returns after a new injury of some sort, then I'm pretty sure it's a fresh or "acute" case of CRPS in its own right. As would be the "spread" of CRPS in such circumstances, where a good argument can be made that each case of "spread" secondary to a new injury, is in fact a fresh immune-modulated case of CRPS, on account of which treatments that may have long since lost their effectiveness, such as nerve blocks delivered under fluoroscopy - may have a new lease on life with respect to combating injury-induced spread.

For the complete treatment of whatever it is I happen to know on the subject, including links and citations to some articles of interest, please check out my post from February of this year - "a few quick points on spread" - in the t.D.C.S. Update Could remission be within my reach and your's too? thread, which appears as Post No. 145.

But as to a re-occurrence independent of any injury, I don't know. One way to find out (and treat it should the response be positive) would be if it responded to a nerve block within three months of the re-occurrence. If so, it would be a fresh case, not unlike those reports of CRPS independent of any known injury. Alternatively, a rheumatologist's blood test for TNF-[alpha] and its soluble Receptors I/II should be close to dispositive if performed within six months of symptom re-occurrence. See, Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups, Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5 [ABSTRACT]. This study is important because it found a significant difference in these serum levels (among others) (p = 0.01) in the same patients, from the time their cases were "acute" (defined as being within 6 months of symptom onset) as opposed to when they had become "chronic" (remarkably in the relatively narrow band of only 6 - 12 months from onset).

(And while I'm sorry there isn't a link to the full text of the Schinkel article - which a friend pulled for me - I will be happy to send on a copy of the PDF to anyone who drops me a PM with an email address.)

I hope this is useful.

Mike

If you want the dollars then help with this sign all the petitions and spread it to as many as possible

Worldwide Awareness Campaign Please Help

There may be as many as 106 million un/misdaignosed suffers of the Worlds Most Painful incurable condition so people and sites from around the world are coming together to turn November 2013 into International RSD Awareness Month, currently only America has a National Awareness Month.
Please spare 5 1/2 mins to watch this video but be aware you may find some of the images disturbing.
http://www.youtube.com/watch?v=MviVcjWZDts
it is vital that you watch it to the end
If you are newly diagnosed I strongly suggest you do not watch it.
If you live in the UK please sign http://epetitions.direct.gov.uk/petitions/31344
E-mail the link to your MP asking why since being informed on 30/10/2010 David Cameron, Nick Clegg and The DOH have refused to do anything about the situation.
You can also send it to some members of the House of Lords.
http://www.parliament.uk/mps-lords-and-offices/lords/
No matter where you live in the world can you please sign here http://www.pledgebank.com/RSDCRPS
http://you.38degrees.org.uk/petition...eness-campaign
http://www.thepetitionsite.com/460/1...ness-campaign/
http://www.change.org/en-GB/petition...ross-the-world
http://www.ipetitions.com/petition/w...ness-campaign/
http://www.gopetition.com/petitions/...-campaign.html
http://www.activism.com/en_GB/petiti...campaign/40439
http://www.causes.com/causes/800617-...ctions/1700679
http://www.petitionbuzz.com/petitions/worldwidersdcrps
http://www.petitiononline.com/RSDCRPS1/petition.html
http://www.communityrun.org/petition...ess-campaign-1
https://petitions.whitehouse.gov/pet...rable/SFkd2cS6

If you live in another Country can you start your own petition and send the link to your own Politicians
If you are willing to commit to spending 15mins a day for 4 weeks then 15mins a week to help spread this then please e-mail me on.
RSDFighter@hotmail.co.uk or join me on facebook
Kevin

Hi Mike!

Thanks for the response! It's actually my girlfriend who has CRPS and I am looking all over for the best ways to treat this horrible condition. She came out of a year long remission last May and is scheduled for a 5 day ICU Ketamine infusion in mid January. Unfortunately, this will be about 9 months after she came out of remission... she did have a 4 day high does Ketamine infusion in late June with Dr. Kirkpatrick, but it only stuck for a few weeks. Is it feasible to push the hospital to include CRA with the upcoming ketamine infusion since she'll be in ICU anyway? Will this be too late given that she came out of remission 7 months ago now (9 by the time of the infusion?) Furthermore, is there any way to keep the CRPS in the fresh stage until then?

Sorry for all the questions, but I just joined this forum and for some reason am not enabled to PM you!

Thanks so much! I greatly appreciate all your helpful information!

I'm thrilled that your girlfriend is getting to see Dr. Kirkpatrick.

As to your question, the only reference I've seen to using CRA in conjunction with ketamine infusions (sort of a belt and suspenders approach) is in the report I referred to out of Walter Reed. That said, I couldn't think of anyone better to ask than Dr. Kirkpatrick! Just an idea, but maybe you guys want to send him a letter/email referencing the study - but not enclosing it were rest assured he knows about it and the last thing you want to do his come off sounding patronizing - and ask what he thinks about it. (In any event, that's how I'd handle it.)

Good luck! (And keep us posted,)

Mike

Hi Mike!

Actually, she already went to Dr. Kirkpatrick (several times actually). We're headed up to Philly for a 5 day infusion with Dr. Aradillas in Dr. Schwartzmann's group. I'm assuming he will know about it as well, but I'm definitely going to ask (especially if you think so highly of it to call it a possible "cure"). Should I also ask about the TNF-alpha blocker? In addition, she's going up soon to Dr. Fugedy in Atlanta for tCDS. I know people on this board have talked about tCDS minimizing spread (I read that whole thread)... would this be equivalent to keeping it in the acute stage potentially holding it there until we can get the effective acute stage therapies?

I will keep you posted! Thanks for all your help!

Hi Mike!

Oops, sorry if I misspoke, she's actually headed up to Philly this time (she's gone to Dr. K several times and we're trying the 5 day continuous IV this time rather than the 3-4 day high dose one that Dr. K does). We're going to Dr. Aradillas who is in Dr. Schwartzman's group. Do you think it'd be worth asking about the TNF-alpha blockers as well? In addition, she's headed to Atlanta soon to see Dr. Fugedy for tCDS. I've read the whole thread about it here and am hoping that this can keep her in the acute phase (is that possible?) until the ketamine treatment (and possible CRA). Are the kind of results you noted for people who get this treatment very close to the onset of symptoms (like the cadet in the article) possible for my girlfriend 8 months out of remission? Could tCDS hold the development of CRPS to maximize benefit?

Thanks and we'll keep you posted! I really appreciate all your information!


As to your question, the only reference I've seen to using CRA in conjunction with ketamine infusions (sort of a belt and suspenders approach) is in the report I referred to out of Walter Reed. That said, I couldn't think of anyone better to ask than Dr. Kirkpatrick! Just an idea, but maybe you guys want to send him a letter/email referencing the study - but not enclosing it were rest assured he knows about it and the last thing you want to do his come off sounding patronizing - and ask what he thinks about it. (In any event, that's how I'd handle it.)

Good luck! (And keep us posted,)

Mike[/QUOTE]

When I was in school, I was taught that the first rule of statutory interpretation was "read." The second rule was "read on."

In thinking about the first question you raise, I went back to my copy of Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups, Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5 [ABSTRACT].

Let's just say it set me back. I had relied on the abstract for close to three years - where the full-text journal only recently becoming available to the respective online university libraries of USC and UCLA - and had not previously picked up on cautionary language from the article that wasn't included in the abstract's remarkably detailed statement of the authors' findings. Possibly because that cautionary language was inserted as part of the editorial process, while the authors' abstract was allowed to go through unscathed. In any event, it became obvious to me that, although I had looked over the PDF when I got it on July 30th, I hadn't looked closely enough, and continued to rely on the literal language of the abstract, for which I can offer no real justification. In any event, the relevant language from p. 134 is as follows:

Up to now the results on systemic inflammatory cytokine responses are very inconsistent and vary between the different study populations and settings. High intra- and interindividual variations were shown in our studies. There is no clinical relevance proven so far that measurement of plasma cytokines is helpful in diagnostic or follow-up of patients with CRPS I.

* * *

Recent studies have proven local involvement of inflammatory mediators, where as systemic responses are very inconsistent which might be due to irregular occurring systemic overspill of local mediators. A clear correlation between acute or chronic stages of disease and systemic inflammatory mediators is not yet shown. This holds true especially if those groups are compared to healthy controls, patients with forearm fractures or neuralgia.

Further studies on local inflammatory responses will elucidate the role of inflammatory components in the pathogenesis of CRPS I. Additional larger longitudinal studies in patients and relevant control groups are warranted before any clinical use for diagnostics or follow-up can be recommended.[Emphasis added.]

As such, my earlier speculation that someone looking to see if they might have a "fresh case" of CRPS might be able to rely on diagnostic testing of those cytokines for which the FDA has approved diagnostic testing in the first place, say, TNF-[alpha] antibodies for Crone's Disease, was at best premature.

Then too, although the rheumatologist who initially suggested my CRPS Dx in 2001 raised on on number of occasions the possibility of treatment with Remicade (infliximab), the drug mentioned in one of two the articles at the top of this thread - Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc. 2007;105(4):1148-1151 - I was put off at the time by the drug's possibly very serious side-effects, even though he was using it all the time on his rheumatology patients. And by the time the article came out five years later, I no longer had anything approaching an acute case of CRPS. So the issue was moot from my perspective.

I'm laying this out for you as best I can, so that no one is disappointed if told in Philadelphia that anti-TNF-[alpha] agents aren't yet ready for prime time in the treatment of CRPS. Still, you should by all means ask. The world has hopefully come a long way since 2006 when neuro-immunologists at both the Mayo Clinic and Johns Hopkins refused to see me as I was seen by other physicians at those institutions, because it was "well known that CRPS [was] not an autoimmune disorder." (Or so I would like to think.)

Good luck!

Mike

Thanks Mike for the read.

"Further complicating the issue is the role of for-profit insurance companies, who have become accustomed to very large, double-blind multi-center Phase III testing, before large pharmaceutical firms (Big Parma) finally gets FDA approval to market a drug that has cost $1B or more to bring to bring to market. And of that, according to a recent report of Forbes, over 90% of the total development cost can be in Phase III (final) testing alone! Enter the for-profit medical insurance companies, and suddenly it's very easy to deny coverage for a procedure that might require a week's hospitalization, sometimes utilizing an ICU. All it takes is to adopt the position that they will approve only those procedures supported by the "best medical evidence," which means the equivalence of Phase III resting, even if the drug at issue has long been approved by the FDA for other uses. And if the money isn't there to do the large scale testing these standards mandate, gosh, that's too bad. See, generally, Evidence-based medicine -Wikipedia article , at Section 6, Limitations and criticism."

My wife, who worked at Lockheed's corporate headquarters in "benefits", could not, did not receive proper care for her RSD for four years. Her coverage was Etna HMO then Cigna and then some other terrible outfit. She explained to me, representatives from each insurance company worked full time at Lockheed who pulled the strings and wrote the contracts that doctors sign off on. She told me she will not get the care she needed and that after 15 years of service she will be terminated in which she was. She needed her doctor (who offered very little care) to sign off on her 2 year long term disability.

The doctor she was seeing at the end of her short term disability was switched out at the last minute with the head of the pain center. He explained to the both of us that Suzy had RSD and what it was, in which we already knew, and then walked out of the office never to be seen again. He refused to sign the long term and never returned our calls. He told Lockheed Suzy was ok to return to work. She never did and was terminated, and that was in 2006. Ironically, Suzy's SS lawyer knew this doctor, and that he was quite up to date with RSD and in-fact helped her on several cases.

She lost her insurance in which I picked up my employers coverage. It was a Cadillac plan and very expensive. But what I will never forget is the immediate treatment she received from her new doctors. 4 years she struggled (she did not tell me her issue for 2 years), within 2 weeks of her termination doctors aggressively put forth an effort to control her RSD using the new insurance plan. Now she is on medicare receiving no care because only a very small handful of incompetent, pee testing, dirty waiting rooms, rude nurses--- doctors except her Medicare/Humana coverage. She rather suffer.

I just pray that perhaps one good thing that came out of these two wars the US has been engaged in is new successful medical treatments that may lead to pain relief for those long term RSD patients.

Second the motion. That, and you've got some all-too-poignant good stuff on the for-profit insurance side of the equation. So thanks!

But now, as to the the motivations of the "interventionist pain management" community [read: guys who went into anesthesiology because that figured they weren't going to "match" in surgery, only to discover they didn't like working under the egos of surgeons but needed to keep up a procedure-heavy practice in order to maintain the lifestyle to which they sought to become accustomed - and besides that way they could control their own hours] please check out the attached "Perspective," written by my pain management doc, Steven H. Richeimer, MD, Are We Lemmings Going Off a Cliff? The Case Against the “Interventional” Pain Medicine Label, Pain Medicine 2010; 11: 3–5. (And for once the file is actually small enough to attach on the forum.)

And to give you a sense as to whether it "touched a nerve," check out the volume of traffic that followed it, as listed in PubMed:

Taylor DR., Reply to Dr. Richeimer's "are we lemmings going off a cliff?" Pain Med. 2010 Nov;11(11):1745. doi: 10.1111/j.1526-4637.2010.00974.x. No abstract available. PMID: 21044266 [PubMed - indexed for MEDLINE]

Gallagher RM, Response to Donald R. Taylor on "are we lemmings going off a cliff?" Pain Med. 2010 Nov;11(11):1746. doi: 10.1111/j.1526-4637.2010.00989.x. No abstract available. PMID: 21044267 [PubMed - indexed for MEDLINE]

Caraway DL, Kloth D, Hirsch JA, Deer TE, Datta S, Helm S, In response to: Are we lemmings going off a cliff? The case against the "interventional" pain medicine label, Pain Med. 2010 Aug;11(8):1303-4; author reply 1305. No abstract available. PMID: 20704679 [PubMed - indexed for MEDLINE]

Enjoy!

Mike

PS No endorsement by Dr. Richeimer of any of my foregoing screeds should be assumed, either as expressed or implied.

PPS That said, in reading the article, perhaps it will be clear why I've chosen to remain Dr. Richeimer's patient for the last 9+ years.

Attached Files

Are We Lemmings Going Off a Cliff[Q] - The Case Against the ‘Interventional’ Pain Medicine Label.pdf (87.3 KB, 283 views)