peripheral neuropathy with cutaneous vasculitis

[Lovsterlover]

I have unfortunately had cut vasculitis for over 45 years. Have been in nremission for a couple of years now but have had a flre for the last 6 weeks. Would love some advice on how to help with the peripheral neuropathy. The pain keeps me up at night and it is painful to get my slippers on. I haven’t worn shoes for years now. I heard that antihistamines help with pain and have been taking 1 Benadryl a day. I am at present On 10mg pred. Did take azothiaprine for some years but reduced from 175mg a day to 0 about 18 months ago. I would like to get back to get back to some sort of normal life with my family who r really supportive but I feel I am missing out on outings with them at moment x

[Hidden]

Unfortunately, it probably won't get much better. I was DX with GPA Vasculitis in 2017. The neuropathy in my feet was so bad, neither myself or anyone else could touch them without me going through the roof. Over the past 6 years, the sensitivity has worn off quite a bit but now they are just extremely painful like someone dropped a concrete block on them. Like you, I have a hard time with shoes. I have bought so many pairs of slippers and shoes but nothing feels comfortable on my feet. Occasionally when I take a step, either foot may just give out like there's no strength and I almost take a tumble. I'm sure the nerves were severely damaged. For several years, I was on Azathioprine, Prednisone, and Rituxan but those all stopped in 2019 when I was declared in remission. I'm currently taking 5 mg Pred each day along with 5 mg Hydrocodone for back pain which helps slightly with the foot pain. You could try Gabapentin and see if that helps you. I was allowed 300 mg a day by my Neph but it didn't seem to help me much. Let me know how things progress for you. Take care!

[Lovsterlover in reply to Hidden]

Thanks for your reply LL. I am waiting for an appointment with my consultant rheumatologist so hopefully he mite come up with a solution. He has been excellent in the past llike u even a sheet on my feet is painful at the moment and I have no confidence in my gp even if I could get an appointment with her. I wear slippers from an online co called moshulu and they are the only things I can wear when my feet are in remission and they do look like shoes and u can wear them outdoors I don’t think I can take gabapentin because I am on blood rivaroxaban indefinitely. But I will ask my rheumatologist thanks for the advice LL and look after yourself. I hope the pain in your feet lessens over time x

[MIK65]

Hi,

I have peripheral neuropathy through nerve damage from EGPA. I have numbness in my legs and right hand but primarily in my feet. I take Apixaban twice a day due to a DVT shortly after diagnosis.

The pain I got in my lower legs and feet was initially very intense, keeping me awake at night and generally affecting my ability to function.

I was prescribed pregabalin to be taken twice a day. My dose was steadily increased at my request and is now 250mg twice a day.

I have been taking them now (along with the usual assortment of drugs including Azathioprine) for nearly three years. I have been in remission for just over two years.

The numbness is something I have to live with which can at times affect my walking. Other than occasional pains in my feet, it is well under control.

I hope you can also find a solution to your issue which is clearly having an impact on your day to day life.

[Lovsterlover in reply to MIK65]

I am so glad u have got your pain under control MIK. I hope to resolve my problem soon. I have to wait for an appointment with my rheumatologist but in the meantime I keep taking the painkillers which does help a bit except at night when u really want them to work. Another problem I have is that periodically clear liquid drips from my feet the first time it happened it was really alarming. I told my gp but she couldn’t give me an answer. It has happened four times now. Something else I have to deal with Haven’t been out for a few weeks now because painful to get my slippers on and worried that the dripping mite happen. My son got me to join the group and I’m glad I did. Thanks for getting in contact with me x

[Lovsterlover in reply to Lovsterlover]

My contact name should b lobster lover x

[MIK65 in reply to Lovsterlover]

Good luck with the appointment. 👍

[Hidden in reply to MIK65]

I'm curious why you are still taking Azathioprine if you are in remission. There should be no need to take it.

[MIK65 in reply to Hidden]

Following diagnosis I was given a series of Cyclophosphamide infusions which were successful in achieving remission. The Azathioprine was prescribed after that for maintenance (to ensure ongoing remission). I also take 5mg of prednisolone daily (with a host of other medication). On diagnosis my ANCA levels were extremely high, that together with the potential for relapses/flares with EGPA the consultants do not want to take any chances. I am reviewed every three months at the moment. Whilst I am extremely keen to reduce the medication, this will be done if and when they are happy that it is safe to do so (I most certainly don’t want any further nerve damage). That said it looks like I may be having a flare at the moment. Short answer is I suppose we are all different in how the disease affects us and in how the Consultants will treat us?

[EdieBD]

So sorry to hear. I got better when immunosuppressants were added to my personal cocktail of meds. I am on Cellcept AND Plaquenil (generics). Have been since 2014. Hives have not returned, but when in rare flareups I do get itchy. I have other autoimmune issues and they all then to flare at the same time. I have been living a much more normal life. I owe a lot to my doctor who patiently treated me.

[citygirl1234]

Sorry to hear. I’ve got peripheral nerve damage from GPA. I’ve found certain things seem to make it worse e.g. temperature changes or if I’m flaring. I also find it worse at night and it used to keep me up. There are some options for pain relief but because it’s neuropathic pain, it is harder to treat and standard painkillers don’t work. My rheumatologist suggested I try taking a low dose of amitriptyline at night. It doesn’t completely take the pain away but helps make me sleepy enough to sleep. There are a few other options too so it might take some trial and error to find the right one for you - please ask your GP and if they don’t help, ask to be referred to a pain clinic. (Some information about some of the options is detailed here: nhs.uk/conditions/periphera....

I also found my pain reduced as my vasculitis got better controlled so it may be worth checking that you are still in remission (or there isn’t anything else going on that could be making your PN worse e.g. B12 deficiency etc).

[Lovsterlover in reply to citygirl1234]

Yes extreme weather hot or cold makes my vasculitis worse but I haven’t had the nerve pain for a couple of years now until I had this flare and it’s been worse than I can ever remember. Perhaps it’s because I am getting older and I can’t tolerate the pain as much I have taken amiltriptaline years ago when I had a decent gp. There answer at seeing ulcers on my feet is to have them dressed by the nurse but I couldn’t stand them to touch my feet at the moment and in the past that has only made them more painful. Medication is the way to go I will ask my consultant when I get the appointment through. Thanks for taking the time to reply x

[citygirl1234 in reply to Lovsterlover]

That sounds horribly painful! Please don’t suffer in silence - I’d suggest you email or call the specialist nurse at you hospital, they might be able to have a word with your consultant and bring forward your appointment (or give your GP instructions they can follow). Worst case scenario, you have to wait till your appointment so you have nothing to lose. Some GPs are better than others and sometimes it takes a note from the consultant for things to swing into motion x

[Lovsterlover in reply to citygirl1234]

Thanks city girl. I have appointment with my consultants on the 6th sep. he rang me and asked me to increase my steroids to 20mg for a week then tapering off weekly. I also contacted my gp and she has prescribed 500mg flucloxallin which I have been taking for Four days now. No improvement yet. I have also been experiencing a wierd symtom over the past few weeks. I have occasionally had a clear liquid dripping from my foot. What’s that all about. The first time it happened I panicked but I’m getting used to it now but it is a worry. Just want to get back to a normal ish life. Still can’t get my slippers on. Will have to cut the fronts down when I see the consultant. It’s good now that I’ve joined this support group and contact people who understand thanks cg

[Katie18]

I take amitryptiline and it was the only thing I found that helps. I was on 20mg. Hope you find some relief. I’ve had churg Strauss which resulted in nerve damage for about 20 years

[Lovsterlover in reply to Katie18]

Thanks for the advice Katie x

[Hidden]

I was going to suggest getting a spinal cord stimulator but after reading a horror story just now, I would say to stay away from them. I asked my pain doctor that I see for my back about my foot neuropathy and she suggested the stimulator. I told her I would think about it but now I'm sure I don't want it.

[Electra1]

Hello, I'm really sorry to hear you're in pain with peripheral neuropathy....it really ruins your day; I have it too. I was referred to pain management team at a neurological rehabilitation unit, about an hour and a half drive away. They prescribed a large dose of gabapentin 3600mg at first. Then I reduced it to the level I needed. It damped the fizzing and sparking pain. Then I was already taking dihydrocodiene for pain relief. The two have not irradiated the pain and sensations, but have at least brought the pain and sensations into a more manageable state. Sounds like you need to someone qualified to deal with pain management. Remember, 'the squeaky gate gets oiled' .......keep telling someone and ensure they refer you to someone who can help help.

[Lovsterlover in reply to Electra1]

Thanks electra. I’ve got an appointment to see my consultant on the 6th. He has advised me to increase my pred to 20mg to see if that helps in the meaning because a have a large lesion in the front of my foot. I am taking dihydrocodene and paracetamol but it doesn’t help much. I alternate with cocodamol which makes me sleepy and does help a bit. I feel weepy most of the time because I can’t get my slippers on too painful. Hard to keep your spirits up when u r in pain. Just hope the lesion improves with the increase in steroids. Mite ask the consultant to prescribe some antibiotics x

[Electra1]

Fingers are crossed for you, Lovsterlover..I hope you have the help you need to have some more fun. Best wishes....Electra

[Lovsterlover in reply to Electra1]

Thanks electra. Missed going out with the grandkids this summer as I can’t put on footwear but they’ve all been round and I’ve enjoyed their company. All lovely little darlings. Glad the gabapentins working for u. X

[Lovsterlover in reply to Lovsterlover]

Still struggling with my flare a new scab I accidentally knock off caused the dreaded liquid start to drip again. It’s a gift that keeeps on giving. The dripping has been happening on and off for 10 days now so I am house bound again now. I think it is called serous drainage and although it doesn’t sound serious it’s isolating. My husband is marvellous but I feel guilty because it affects his life as well. Sorry to ramble on and hoping that dripping stops as my son has invited all the family over this weekend for a birthday treat Ll

[Hidden]

I'm guessing you love lobster? I noticed that the V key is right next to the B key on the keyboard. Fat fingered it maybe?