davecom Posted August 18, 2013 Report Share Posted August 18, 2013 I'm not sure if ARA 290 has come up before, but there have been several studies the last few years and its safety profile looks particularly exciting, even if its actual efficacy is only mildly exciting:http://www.ncbi.nlm.nih.gov/pubmed/23168581http://www.clevelandclinicmeded.com/live/courses/2012/WASOG12/post-syllabus/SaturdayOct6/1445%20BRINES.pdfhttp://www.hindawi.com/journals/prt/2012/256024/Company developing the drug's site:http://araimpharma.com/ara-290/The goal of this drug is not just to reduce pain, but to actually help small fiber nerves regenerate apparently (although some of these articles are conflicting on that). Can anyone find a study actually showing improvement in nerve fiber density? I saw that referenced in one of the studies... Anyway, it's good to know there are people out there researching this stuff; and I think I saw that ARA 290 was approved for orphan drug status in sarcoidosis induced small fiber neuropathy. So... if your POTS/dysautonomia is caused by sarcoidosis, you maybe in luck! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 18, 2013 Report Share Posted August 18, 2013 Thanks for sharing DaveHere is another article along the same lines:http://informahealthcare.com/doi/full/10.1517/21678707.2013.719289The erythropoietin analog ARA 290 for treatment of sarcoidosis-induced chronic neuropathic painIntroduction: Sarcoidosis is a multi-system inflammatory disorder that may affect the peripheral nerves causing neuropathic pain. Chronic neuropathic pain is a debilitating disease and current treatment options are either of limited efficacy or are hampered by the development of serious side effects. A novel pharmacological treatment option is the non-hematopoietic erythropoietin analog ARA 290, a small peptide acting at the innate repair receptor, which is a heteromer of the erythropoietin receptor and β-common receptor. ARA 290 was recently granted designation as Orphan Drug Product by the FDA, for treatment of neuropathic pain in sarcoidosis patients.Areas covered: This report reviews the pathophysiology of sarcoidosis and, to understand the mechanistic pathway of ARA 290, the role of the innate repair receptor in inflammation and its natural and synthetic ligands, erythropoietin and ARA 290. The results of two proof-of-concept studies are presented that show the ability of ARA 290 to induce analgesia greater than placebo in patients with sarcoidosis-induced chronic moderate to severe neuropathic pain, without safety issues.Expert opinion: ARA 290 is a promising novel therapeutic option in the treatment of neuropathic pain in sarcoidosis. Further studies are designed to obtain additional proof of ARA 290's analgesic efficacy and ability to increase the quality of life in afflicted patients.Alex Quote Link to comment Share on other sites More sharing options...
davecom Posted August 18, 2013 Author Report Share Posted August 18, 2013 I emailed the company and they sent a nice reply about it. Unfortunately they are only expecting to hit the market for sarcoidosis induced neuropathy in 2015. Quote Link to comment Share on other sites More sharing options...
badhbt Posted August 18, 2013 Report Share Posted August 18, 2013 I just want to through this out there. I am a Nurse and I call patients before their procedure and go over their medical histories. I had a patient that was recently diagnosed with neurosarcoidosis, without any systemic sarcoidosis. It was only in her nervous system and it effected her ANS. She was worried about the staff knowing how to treat a patient with dysautonomia. I didn't tell her I knew....personally.I guess she had a long road of normal tests, then they finally did a brain biopsy and it came back for sarcoidosis. I guess this form is uncommon because it is usually in another organ like the lungs.Does anyone have this form of sarcoidosis, if not where did it originate from? Quote Link to comment Share on other sites More sharing options...
issie Posted August 19, 2013 Report Share Posted August 19, 2013 More reasons to work on immune system function and inflammation. Issie Quote Link to comment Share on other sites More sharing options...
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