I'm looking for some advice and experiences that Vasculitis sufferers have with Peripheral Neuropathy.
Having suffered with Peripheral Neuropathy for a number of years I know that Vasculitis (in my case GPA) is the most likely cause in my case. This has caused many issues which have included: significant nerve pain, tingling, numbness, bowel and bladder issues, drop things, sleep problems, etc.
Fortunately, for most of the last two years Amitriptyline has kept it relativerly tolerable. However, 6 weeks ago I had to abruptly stop amitriptyline as it suddenly started causing an irregular heart beat. The first two weeks after stopping were bearable but the last four have been awful as the Symptoms described above returned with force. As people will know the nerve pain associated with this condition does not respond to traditional painkillers and as such my best relief has been a 'Tens Machine' which interrupts the nerve signals, but only temporarily.
I am just about to start Dosulepin as a replacement for amitriptyline, with options to potentially also take Gabapentin or Pregabalin (Lyrica) in a few weeks time if Dosulepin does not provide relief from the symptoms.
My GPA symptoms are just about ok at the moment (about the best control I have had for a few years) thanks to Leflunomide (my body previously objected to Azathioprine and then Methotrexat).
I was wondering if anyone could share their experiences of Peripheral Neuropathy in general, medications they have used to control the symptoms and any other useful tips.