CRPS – A burning unmet need

Complex regional pain syndrome (CRPS) is an intense form of chronic pain that usually starts by affecting a single limb. CRPS can arise spontaneously or after an injury.

The pain is always out of proportion to the severity of the initial injury and some experts do not consider CRPS to be a neuropathic pain entity, particularly in cases where there is no identifiable damage to the somatosensory system. CRPS is uncommon and therefore classified as an orphan disease. Its mechanism is poorly understood and there are few effective treatment options.

AKIGAI researchers have treated treatment-refractory CRPS with EGFR-inhibitors, the same way they have treated refractory “classical” neuropathic pain, with similar positive outcomes.

Kristin's story

53-year old Kristin woke up one morning because of sudden, spontaneous onset of severe pain in her right hand which was also red and swollen.

For the next eight months, she was investigated and treated by several physicians, including a general practitioner, orthopaedic surgeons, neurologists, rheumatologists, and anaesthesiologists at a tertiary university pain clinic. The doctors found no plausible explanation for her symptoms until the diagnosis of CRPS was made. Her pain was resistant to paracetamol, non-steroidal anti-inflammatories, steroids, anticonvulsants, antidepressants, clonidine, opioids, nerve blocks and physical therapy.

All this time, and despite all the best efforts, Kristin’s pain remained 8-10 on a 10-point pain scale, and she slept only a couple of hours each night. Left without any treatment options, she was given an EGFR-inhibitor.    

Dr. Kersten remembers being astonished by what met him in the waiting room. Kristin had constructed a shield around her hand to protect it from any ambient air movement which was enough to aggravate the already unbearable pain. On the day after her first infusion of EGFR-inhibitor, Kristin rang him, crying:

I am pain-free and driving a car again! 

Kristin has been prescribed EGFR-inhibitors to treat her CRPS pain ever since. She started out with an antibody but converted to tablets over 10 years ago. Her CRPS is still active and has spread to other parts of her body (her limbs swell up periodically), but the extreme pain that woke her from her sleep so many years ago, has not returned.

Read the full study on Kristin's case

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AKIGAI is looking for partners and collaborators to help realize EGFR-inhibitors for use against neuropathic pain.

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