Vasculitis and Peripheral Neuropathy

[PCAD]

Hi everyone,

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.

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I too have GPA (dx 2007) limited to ENT and respiratory regions and also have immune mediated peripheral neuropathy. In theory I'm in remission and medication free apart from annual Rituximab as maintenance plus daily co-trimoxazole and carbocisteine. Unfortunately my peripheral neuropathy has worsened during the last 7 years along with cluster headaches which have persisted since day one. It may all in some way be related to my complete lack of response to initial induction therapy drugs (azathioprine, prednisolone, methyl prednisolone and cyclophosphamide) and some of the damage could indeed be due to some me of these drugs themselves).

Unfortunately, in my case, no medication to date has proved effective at dealing with the pain. I've had a raft of different drugs over the years, including opiates (despite that they shouldn't work on nerve damage) but nothing has made the slightest difference. The only one from your list I haven't tried is dosulepin but as it's mechanism is similar to others that 'failed', I see no reason to expect it would work for Mrs

I also have a 2 cm section of one of my bronchi which repeatedly narrows and requires dilatating under general anaesthetic every six months. This may prove to be significant for reasons I'll explain.

It's probable that the symptoms are all as a result of damage created at onset but David Jayne has suggested I may be one of a group of patients who have low-level, grumbling vasculitis. This is undetectable in blood tests and quite likely not to be seen in biopsies either. The intent at the next surgical procedure is to have one of the vasculitis respiratory specialists take a closer look at the area in question prior to the ENT surgeon poking me with the bougie. Photographs taken at the last dilatation reveal a slightly reddened area surrounding the narrowing but it shows no sign of granulation and may well just be scarring.

If it is suspected to be active disease then we'll look at a Plan B as it means the Rituximab isn't acting as effectively as I need.

I sincerely hope the dosulepin serves as a suitable alternative for you but I think it's wise to be aware of potential long term damage from the disease, even when the vasculitis is apparently quiet.

Healthy wishes.

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Have spent last 9 months on gabapentin for both polyneuropathy and seizures...took the edge off the neuropathy...but still there and depending on day to day inflammation...Will definitely intensify...Good luck...let us know of Pla A works..