Please see below.

[Wolf52]

Just wanted to ask, does anyone have neuropathy along with their vasculitis? I have rheumatoid vasculitis diagnosed about two weeks ago but have had neuropathy longer - my feet and legs tingle and burn an awful lot. Have had 2g of steroid infusions and will be restarting my treatment (tocilizumab) for rheumatoid arthritis on 9 November. Am taking daily prednisolone between 10 and 20 mg and tramadol for pain at night (it makes me sleepy so cannot take whilst at work/driving). Is there anything else I can do for the neuropathy as the pain is awful and I am losing a lot of sleep? Thanks to anyone who can assist. Nina x

[Hidden]

Hi Nina

I have WG/GWP and suffer from neuropathic pain in my peripheries and in my case it's suspected that it's from damage to the blood vessels associated with the nerves. I also have inflamed/damaged facet joints at the base of my skull which produce a great deal of continuous pain (24/7) which in turn means I have a very difficult time sleeping, even which chemical assistance.

No medication so far has eliminated the pain although a mixture of Ibuprofen and paracetamol sometimes helps with the finger and toes but the headaches are absolutely untouchable without something like morphine.

There's been quite a bit in the press recently about analgesic neuralgia, i.e. where the taking of analgesic medicines becomes the cause rather than the cure for pain and you might want to try a short break from pain killers to see if it helps (perhaps best to do this with your doctor's advice).

I sincerely hope you get some relief and sleep soon.

Healthy wishes.

Martin

[Wolf52]

Thank you both for your replies. I am unable to take anti inflammatories and don't tolerate codeine well either hence the tramadol. I am hoping that when I see my rheumatologist in a couple of weeks he can suggest an alternative. I do have ulcers some are now drying up and scabbing over, but I have a few persistent ones that are not healing at all - have had the ulcers for about a month now. Started with skin vasculitis, but was misdiagnosed by GP, so had it for about six weeks before I knew what it was. Didn't get any sleep at all last night, not sure how I got through work, but am home now and ready for an early night after a large glass of red.

Nina x

[2534 in reply to Wolf52]

I wonder if going to a Pain Unit would be helpful. I go to the one attached to the Churchill Hospital in Oxford. I also wipe my legs down each morning with TCP or Boots antiseptic liquid and then put on plain emulsifying ointment with a clean knife so as to avoid infection. This skin regime has seen a considerable improvement in my skin condition and ulcers do not seem to take such a hold as they used to.

2534

[Katie18]

Hi nina I have churg Strauss syndrome and suffer with nerve pain in my legs and foot similar to what you describe. I take prefab alien 3x 100 a day and 2 x 10mg amitryptiline at night. The amitryptiline can make you feel groggy in the morning but it really helps get a good night sleep. I find it's best to take it about 730pmish. Hope you find a solution

[2534 in reply to Katie18]

What is prefab alien please?

2534

[Katie18 in reply to 2534]

I will have meant pregabalin - sorry it's predictive text

[2534 in reply to Katie18]

Thanks! I found Pregabalin turned me into a zombie!

[Wolf52]

Thanks Annwen and Katie - maybe its worth considering the amitryptiline .... will talk to my gp on Wednesday. Nx

[Wellsie]

Hi

I have PAN and also suffer with peripheral nerve issues in my arms and legs.

In my own experience, only tramadol and morphine work. I was on 60mg of amitriptaline a day along with 600mg of gabapentin which didn't seem to do anything for me.

The opioid route feels like a sledgehammer to crack a nut, but does help induce less restless sleep.

[John_Mills Volunteer]

Nain and Nina, not only do you share an anagrams of each other's name, but you also both have leg ulcers which does suggest the possibility of active vasculitis being the cause. Has this been investigated?

John

[mandijt]

Hi there

Yep, this pain describes the pain i get in my left foot.......a kind of hot fizzing! It drives me mad and my foot feels so heavy all the time too. It's worse if i nave to spend any lenght of time on my feet and i cant wear high heels for very long now either. If i'm not careful that's when my foot swells and i get tiny purple pin prick type spots under the skin across my foot from the toes to the ankle.

[2534]

I found amitriptyline at night along with the tramadol helpful as it seems to give me a slightly better night's sleep and the sleepy effects wear off quickly leaving the day fairly alert!

2534