What does Dr. S say when Ketmaine does not work? Does he have anything else to offer or advise. I dont know if it is worth seeing him because i did the ketamine thing with no results...

Debbie

Dear Debbie and All,
I saw my other neurologist a few days ago and she told me about an article she just read and I just found it and pasted it below about intravenous immunoglobulin (IVIG) for all to read. At least it gives us some hope that Dr. S and others are still doing great research to help us get some pain relief. My neurologist was very excited about the study but said it was still very new.
Here is the website location I got it from today: http://journals.lww.com/neurotodayon...wn_to_Relieve_...

Here is the article:

Neurology Today:
4 March 2010 - Volume 10 - Issue 5 - p 27–28
doi: 10.1097/01.NT.0000369551.82449.62
Article
IVIG Shown to Relieve Complex Regional Pain Syndrome: But Study Has Limitations, Experts Say
VALEO, TOM
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ARTICLE IN BRIEF
A small study found IVIG effective for alleviating chronic regional pain syndrome, providing evidence that modulating the immune system could help with managing pain.
A small but intriguing study found that intravenous immunoglobulin (IVIG) can provide relief for people suffering from complex regional pain syndrome, or CRPS, which causes chronic and often intractable pain, usually in an arm or leg, long after recovery from an illness or injury.
While pain management experts not involved with the paper said the trial had several limitations — including the small number of patients and the high cost of the therapy — they said it was valuable in offering evidence that modulating the immune system could help in pain management.
In the Feb. 2 paper in the Annals of Internal Medicine, researchers at the Pain Research Institute at the University of Liverpool in England reported that they administered a half-gram of IVIG per kilogram of body weight to 13 people who had been suffering from CRPS between six and 30 months. All had failed to achieve significant relief from conventional treatments including acetaminophen, nonsteroidal anti-inflammatory drugs, opioids, antidepressants, gabapentin or pregabalin, and physical therapy.
Figure. DR. ROBERT S...
Image ToolsThe Liverpool researchers got the idea for the IVIG treatment several years ago when they gave the drug to a patient with primary hypo-gammaglobulinemia, a blood disorder that leaves people unusually susceptible to infections such as pneumonia and influenza. The patient suffered from widespread pain of unknown cause (not CRPS) that was relieved temporarily after IVIG was administered. Repeating the treatment alleviated the pain. The researchers then administered IVIG to other pain patients, who experienced some relief.
Only subjects who reported pain intensity of at least five on an 11-point scale for seven consecutive days were included in the study. One subject dropped out after becoming pregnant. Of the remaining 12, half the subjects received IVIG and half received a saline placebo. Then, after ending treatment and waiting several weeks for responses to diminish, the treatment was reversed, with the IVIG subjects receiving saline, and the saline subjects receiving IVIG.
Beginning six days after infusion, when discomfort from the injection and transient side-effects had subsided, subjects were asked to rate their pain every day for two weeks. Five of the 12 subjects reported median pain scores at least 2 points lower with IVIG than with the saline placebo, and three of the five reported pain scores at least 50 percent lower. (One patient reported a 2-point drop in pain after receiving saline.) The average drop in pain after receiving IVIG was 1.55 points.
“To our knowledge, we have shown for the first time that low-dose IVIG reduces pain in patients with longstanding, refractory CRPS, with few adverse reactions,” the study authors, led by Andreas Goebel, MD, PhD, of the University of Liverpool Pain Research Institute in the UK, wrote. “Intravenous immunoglobulin may emerge as an effective and safe novel clinical treatment option for otherwise refractory disease, but confirmatory trials are required.”
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STUDY LIMITATIONS
But an editorial in the same issue by pain researchers Frank Birklein, MD, PhD, of the Department of Neurology at the University of Mainz in Germany, and Claudia Sommer, MD, PhD, of the University of Wurzburg, asserted that even if the results of this small study are replicated by larger and more rigorous research, the high cost of IVIG — currently $75-$124 per gram in the US — would make it impractical as a long-term treatment, especially when less costly alternatives such as ketamine, magnesium, and tadalafil (Cialis) have shown similar efficacy. (At $100 per gram, one dose for a 200-pound man in the study would cost about $4,500.)
“We remain skeptical that those who make payment decisions will cover IVIG in CRPS ... without much more convincing evidence that IVIG is more effective than other therapies,” the authors stated.
Another pain researcher, however, pointed out that other treatments for CRPS can be very expensive too. “Compared to prolonged IV ketamine, IVIG is cheap,” said Michael C. Rowbotham, MD, professor of clinical neurology and anesthesia at University of California-San Francisco Pain Clinical Research Center. “Ketamine itself is cheap, but the administration protocol is expensive. Putting people into a ketamine coma for days at a time requires intensive nursing support. Nerve blocks frequently employed for treating CRPS also are very expensive. CRPS is a pain problem where the cost of treatment can very rapidly reach many thousands of dollars.”
Still, the study by the Liverpool group has other imitations, according to Robert J. Schwartzman, MD, professor and chair of the Department of Neurology at Drexel University College of Medicine in Philadelphia. “Only 13 patients received the therapy, and they had minimal response,” he said. “Only three patients got 50 percent relief, and they only studid the patients for three weeks.”
Dr. Schwartzman, like the authors of the accompanying editorial, was concerned about the blinding of the study. The study failed to show a placebo response, “which raises doubts about the adequacy of the blinding,” the editorial authors wrote. “The observed response to IVIG (20–30 percent pain reduction from baseline) is in the range that one would expect for the placebo response.”
Dr. Schwartzman agreed that the weak response to IVIG that most patients displayed is hard to distinguish from a placebo effect. “In the pain business you've got to beat 30 percent relief of pain – that's the placebo effect,” he said. Also, IVIG is very hard to blind because people who receive it get a very bad headache. I've always used IVIG with steroids because when I didn't, at least 50 percent of people got a very bad headache.
Figure. DR. ANNE LOU...
Image ToolsWhile the authors of the study did not administer steroids, they placed a cotton bag over the IV apparatus to conceal the bubbles and foam that IVIG produces in the drip chamber during the infusion. And because IVIG is stickier than saline, they primed the infusion line with normal saline to prevent the patient or the physician from identifying the substance by its viscosity if it dripped from the end of the IV line.
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ROLE OF IMMUNE SYSTEM: PAIN
The study, while small, adds additional evidence that the immune system plays a key role in generating the chronic and disproportionate pain characteristic of CRPS, said Anne Louise Oaklander, MD, PhD, associate professor of neurology at Harvard Medical School, who was not involved with the study.
The study authors noted, for example, that other researchers also have found antineuronal autoantibodies in patients with CRPS. “Intravenous immunoglobulin not only potentially interferes with these autoantibodies but also downregulates proinflammatory cytokines, which are important in the mechanisms of CRPS pain and hyperalgesia, in the peripheral and the central nervous systems,” they wrote.
“This builds on several other areas of research showing the importance of immune interactions,” said Dr. Oaklander. “These include epidemiological research showing that patients with CRPS more likely to have asthma, and evidence of cytokines and other pro-inflammatory markers in tissue fluids and cerebrospinal fluids from these patients. Data from three rat models of CRPS also highlights the importance of the immune and inflammatory response to nerve injury.”
These studies may help explain why CRPS develops in just a few of the many patients who sustain injuries, Dr. Oaklander said. “I think this may be similar to peanut allergies,” she said. “Some patients are primed to have a disproportionate response to a stimulus that is innocuous or trivial for the vast majority of people.”
The immune system is very important in pain, Dr. Schwartzman agreed, adding that this is further evidence that dampening the immune system helps regional pain syndrome and probably other pain syndromes. “We used to think all pain had to do with pain transmission neurons, but a lot of it has to do with turning on microglia and astrocytes that make inflammatory cytokines that stimulate pain processes. So if you can turn off the immune component of this, you really can help dramatically. It's a whole new way of looking at pain.”
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References
Goebel A, Baranowski A, Ambler G, et al. Intravenous immunoglobulin treatment of the complex regional pain syndrome: A randomized trial. Ann Intern Med2010; 152:151–158.

Birklein F, Somer C. Editorial — Intravenous immunoglobulin to fight complex regional pain syndromes: Hopes and doubts. Ann Intern Med2010; 152:188–189.
PubMed


© 2010 AAN Enterprises, Inc.

Trying a new link to that article - for some reason the one provided didn't go straight to the article.
http://journals.lww.com/neurotodayon...l_Pain.10.aspx

That site does have a copyright , we are checking if copy /paste is acceptable or not.

Ooohhh I can help on this one..Dr. S and I spoke about the article during my consult yesterday.. He said the IVIG is good for temporary relief.... AND let me add.. I would recommend anyone who is tempted to see Dr. S.... to please make an appt.. He is such a nice, smart ..kind Dr. that I am so happy I went to see him... What a nice..INTELLEGENT Dr. Even to get his opinion on your RSD and your status...it's is nice to have him on your side... well worth his weight in gold!!! The RSD king..

Let me know if I or others who have seen him can help you... and you too can swing by and see the Rocky steps!!!!

Kathy

I live on the west coast......no way could I afford to go see Dr S.............I would love to since these new symptoms started. It is miserable when one of these new flares happen.................my whole darn body burns..........starts on my scalp & darn near encompasses my whole body...........whole body meaning my skin.........the surface of my skin.

Debby

Dr S, will consult with your own doctor! Anywhere.

Not for free, of course.

My doctor, Knobler, is one of Dr Schwartzman's first partners.
They've both got different reputations here, in PA.

Dr. S, is a bit of a cowboy. He'll ride you hard, and put you up wet!, he'll try everything, sadly, there is no cure. At least, he'll get you to a PM psychiatrist, whom, IMHO, is a cowgirl. Dr Herring. She's a bit over the top for me, but, that's in hindsight. She's also very kind, just like DR S!

Doctor Knobler, (Fort Washington, PA) Left Jefferson, a short bit after Schwartzman did.
He never chose Dr S's "partner's" in pain..
He's much more conservative, because he knows, that putting you through so much more pain, will do no good.
He cares! He's GOT RSD! So too, does his wife, but they cured that!
THIS DOCTOR IS THE FINEST, I've met!
He TRULY UNDERSTANDS US!

He had a mild heart attack last year, and really, doesn't need to work any longer.
But, He Does!
Because he cares!
He is one of my FAVORITE People!
If you can get to see him (He takes no insurance), do so. I see people flying in from around the world to do so!
I can't say anything better, about ANY Doctor!! Especially for RSD or MS! (His specialties).....

Be Well, Ya'll!

Pete
asb

So Pete..can you clearify your blip about "so does his wife but they "cured" that..What does they cured that refer to?? As we know there is no curing of RSD only possible managing it..

thxs..Kathy