Is CRPS an auto-immune disease

Intravenous Immunoglobulin in Complex Regional Pain Syndrome

Andreas Goebel on the results of his latest clinical trial

.Just imagine the causes of some chronic pains are completely different from what you had thought. Complex Regional Pain Syndrome is a severe pain which persists after limb trauma. You are unlucky if you develop this nasty condition, but problems mount if you don’t belong to those 85% who get at least some relief within the first 1-2 years after trauma. If your pain is not better then, chances are that it is not going to recede any time soon.  For this article I use the term ‘nCRPS’ to denote un-resolving CRPS after more than one year. The UK Institute for Clinical Excellence (NICE) estimates, that nCRPS will, on average last 15 years, although some people will get better earlier.  Up to now it has remained a mystery what causes CRPS. The affected limb’s representation in the brain changes. And some treatments which gently focus the brain’s attention to the affected side can reduce nCRPS pain, may even help to resolve the condition. Amongst these treatments, Lorimer’s Graded Motor Imagery stands out because this treatment was efficacious in a randomized controlled trial for the rather large nCRPS subgroup after dorsal radius fracture (another treatment, mirror therapy was also successful, but only in the tiny subgroup of patients after stroke). Because of the described changes in the brain and the success of ‘brain training’, people have started to think that whatever biological cause initially elicits CRPS is perhaps not so important later – that nCRPS  is essentially sustained by the brain.

However this may not be so. In February we published the results from a randomized controlled trial (1) which clearly show that the pain in nCRPS is reduced when patients receive a drug called ‘intravenous immunoglobulin’, IVIG. I would love to say that we thought really long and hard to come to the conclusion that we should try this treatment. Truth is we stumbled across it. IVIG is produced from the pooled blood antibodies from 3000-20000 blood donors. It can help people who, because of a genetic defect cannot make these antibodies and therefore get serious infections.  And yes, we first came across the power of IVIG to relieve pain by chance, when we had a patient with antibody deficiency and concomitant chronic pain. We observed that whenever she got IVIG for her antibody deficiency, her pain was also profoundly relieved.   In similarly serendipitous observations made all over the world since the early 1980’s, medics have reported that IVIG can help to treat some hitherto literally untreatable inflammatory or autoimmune conditions. We first published our results of the open treatment of 140 patients with various chronic pains in 2002. Patients with CRPS, trigeminal neuralgia and postherpetic neuralgia responded best, while patients with back pain had only rarely meaningful benefit.

So is nCRPS an inflammatory or autoimmune condition? It appears so, at least in some cases. In separate laboratory studies, we and others have since discovered that many patients with nCRPS have antibodies directed against their own nerves (=’autoantibodies’) suggesting that CRPS could be ‘autoimmune’ (i.e. it could be due to a reaction of the immune system against the own body). We don’t know exactly how these antibodies work, and whether they are indeed responsible for CRPS, however these laboratory findings, together with the clear cut positive results from our trial have raised the odds in favour of their importance. So is the brain then not important? Well – at least it is not the brain alone. There is something odd about our patients’ responses to IVIG: most patients respond to unusually low doses (0.5g/kg), and they respond much quicker than people suffering from other IVIG-responsive conditions.  Equally unusual is that our patients very likely do not respond to treatment with steroids, the panacea of things going wrong with the immune system. I would not be surprised if the way by which the immune system causes CRPS is different from that by which is causes other conditions. It is possible that if we can figure this out, we may find an entirely new way by which the immune system can cause disease. Can brain-training override these immunological processes in some patients? – I don’t know, but I am keen to find out. It seems that confirmation of the efficacy of IVIG has opened a new puzzling chapter in the epic, oddysseic journey to find the CRPS cause and cure.

About Andreas

Andreas Goebel Is CRPS an auto immune diseaseAndreas Goebel is a very fast walker. In fact, he is a fast talker too – insofar as he talks quickly, not insincerely.  He is, I guess, a ‘Fast Sinceretalker’.  A clever fellow and an astute observer of the patient’s lot, he works as a Pain Specialist with a background in Anaesthesia and Immunology. He has some heavy hitting publications in this area, which is why he is Senior Lecturer at the University of Liverpool, and Consultant in Pain Medicine at the Liverpool Walton Centre Hospital, one of the largest pain teams in the UK. Check out his website at the Centre for Immune Studies in Pain. Clearly, he didn’t write this bio.

References

rb2 large gray Is CRPS an auto immune disease [1] Goebel A, Baranowski A, Maurer K, Ghiai A, McCabe C, & Ambler G (2010). Intravenous immunoglobulin treatment of the complex regional pain syndrome: a randomized trial. Annals of internal medicine, 152 (3), 152-8 PMID: 20124231

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Comments

  1. I have believed it may be the probable cause of my continued sickness (CRPS 16yrs.).
    I continually get colds, influenza, pneumonia. I have told my Doctor “it’s as if don’t have an immune system.”

    I spoke with my Doctor and gave him this article. I am now awaiting authorization from my HMO. 09/08/10

    I will NOTIFY YOU of my results, if you would like. Just tell me where to send them !.
    You can notify ME of where YOU would like them sent. Providing I receive authorization.
    Thanks.

    [Reply]

    Admin Reply:

    Hi Stevo. Thanks for commenting. If you would like to contact Andreas you can do so here

    [Reply]

    Anonymous Reply:

    My husband has suffered for 15 years and he has fevers constantly and if someone ill even looks at him he gets sick-i am convinced that treatment with drugs like those given to people with RA and they would be successful

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  2. I would like to know the answer for the IVIG treatment for RSD (CR
    PS) as I have had it for 8 + years and now have it full body. I also seem to have skin infections, sinus infections, etc more and more. A while back, I mentioned IVIG to my doctor and he dismissed the idea. Would love to know if it could/would/does help RSD.

    Thanks!
    Theresa

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  3. Patti Moser says:

    I have had RSD since 1995. I did have a remission period during 1999-2005. Currently it has now spread throughout my entire body. I also have a autoimmune bowl disease that is still unexplained I also was recently hospitalized for Pleurisy. I have given this article to all my doctors and I’m hoping to look at this as an option. I have been runny out of options so I hope this works. HUGS to all that suffer with this horrible disease.

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  4. I am a true believer that the mind is a powerful thing, not when it comes to CRPS pain 24/7, what are you experts talking about ?its all in my head, you have to retrain your brain they say. If it was that simple don’t you think I would turn the pain off, mirror image therapy,mmm, talking about it mmm just doesnt help because even the pyhscologist don’t understand pain. Pain management yes give me the medication. If crps has something to do with your brain / nervous system etc..why am I on the strongest pain medication the government will allow and I’m still in dibilitating pain at 35 yrs of age after having spinal surgery 18 months ago.mmm might go tell myself I’m not in pain anymore oh that helped, not! Yet the medical world doesn’t have an answer for crps.retrain your brain,then get a mirror box and your told to live a normal life. Experts???

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