Is there anyone in the Harpenden area , herts with a vasculitic peripheral neuropathy ? Or any local support groups or chat for help ?

[Starburst]

I have had this for 6 years now and am really struggling atm - I have 5 children and work from home part time but all I want to do is sleep - I'm on pregablin, mycophenelate and tramadol with regular steroid injections too - any help to get me through would be greatly appreciated please !

[Albasain]

Hi Starburst,

I suspect that you may have mono-neuritis multiplex which affect more than one nerve routes in your limbs especially your legs. It causes pain in the joints typically the ankles and also the hands. If so then steroids will help with the inflammation causing the discomfiture. You do not say what other diagnosis in regards vasculitis you may have.

In regards Support Groups, the London Vasculitis Support Group may be your nearest. It is based at Swiss Cottage in London NW3 but covers the Greater London area north of the River Thames and surrounding counties which includes Herts where you live. The group has members from south Cambridgeshire and from Surrey also. The next meeting is on Sunday 20th October at 12 noon. If this is of advantage to you, email me at: [e-mail] or telephone me on 0742 913 7670 I will be glad to help.

Best Wishes,

Dave

[Starburst in reply to Albasain]

hi dave - thanks for replying to me - i looked in to the mono-neuritis multiplex and it looks similar to my condition - i'll read a bit more in to it this week - when i'm next up to attending a meeting i'll drop you a line to see when the next date is. it's really comforting to know there is help and information out there. it's a very lonely condition as often you end up house and bed ridden and not getting out as much as you want to . i have a very supportive family and so i am lucky they understand and look after me. i think i'll battle on with my current medication and perhaps up the steroid intake until i get to a level that suits my lifestyle. once again thankyou

[joeod]

Hi I had peripheral neuropathy for c 8 months before I was diagnosed with Anca assoc vasculitis.I went from being extremely active to barely being able to walk 50 yards using walking sticks.I was refered to a specialized pain management clinic in my local hospital.they used pregabalin,neurontin and eventually ketamine ....this got the pain under control and after about 18 months I was able to get off all painkillers....whilst everyone is different I think effective pain management is the key to making a good recovery joe

[Starburst in reply to joeod]

hi joed - thankyou for rteplying - i think as you say the effective pain management is the key to all these types of illnesses. if i can get my doses upped slightly i think it may help me move on from the extra sleepy stage i'm going through. i sleep a lot with this anyway but more this last month - do you feel the winter affects you too ? thats so good getting off the pain killers in 18 months - i'm sure you've noticeda much better quality of life ? lynne

[Galaxy2]

Hi There

I don't live near you but can relate, I too have a peripheral neuropathy as part of my vasculitis.

It has taken a long time to get my symptoms under control and I rely on prednisolone to keep those symptoms at bay, whenever I try and reduce from my current dose it all comes back. I also take mycophenolate and hydroxichloroquine. I can walk normally now and am so pleased I can lead a relatively normal life which is something a couple of years ago I thought would never happen again, so despite all the risks of the medication I am very grateful for it.

I had a year unable to work and its taken another year to build my hours back up at work and now I do four days a week but I am exhausted by the end of my working week and spend my 3 days off recovering, I have a young child so know that there really is no thing as rest. I think fatigue is all part of the package and at times it just seems so much worse than other times. I did also take pregablin which I didn't get on with but remember it did make me really sleepy and gave me a bit of a spaced out feeling.

Do feel free to private message me if you want to email.

Take care

Jenny

[hannesjooste in reply to Galaxy2]

Hi Jenny

I would like to take you up the prednisolone dependancy. I have WG with the peripharal neuropathy simptoms - my feet and hands are affected. I am on 150g Azithioprine and 5 mg of pred. My feet are particularly sensitive, especially the soles, not swollen but red and appear inflamed. I cant walk very far because of the pain. I have been reducing the pred gradually - do you think the 5 mg is to little?

Regards

Hannes

[Starburst in reply to Galaxy2]

hi jenny, thanks for taking the time to reply to me - you sound so similar to me with your fatigue and how you have been recovering. what is hydroxichloroquine? i have to really pace myself - ie if we re going out on a sat night i will spend all day in bed to get enough energy to go out and then may only last an hour. the next day will normally be spent in bed recovering from fatigue. i don't drink alcohol at all as it affects my tablets and makes the pain in my legs unbearable. its a case of pacing myself so i can at least look after our 5 children and run our business part time from home. at the beginning i thought i'd never leave my bed - can i ask how old you are and how many years you have had this ? do you get fed up with being exhausted ? take care lynne

[Galaxy2 in reply to Starburst]

Hi Lynne

I will email you over the weekend when I have more energy and my brain doesn't feel pickled.

jenny

[Galaxy2]

Hi Hannes

I can only speak from my own experience, I have never been able to taper down off prednisolone below 7mg because it just about keeps my symptoms under control at that level, anything below and my quality of life is really affected.

My specialist thought initially that the mycophenolate would enable me to come off prednisolone completely but that hasn't been the case.

I think many people find a low dose that keeps a lid on their symptoms while on other immune suppressants but I would suggest you ask your specialists advice on that one.

Take Care

jenny

[Mags88]

Hi. New on this site and I was just scrolling through questions and came across yours. My vasculitis is contained to neuropathy (for now) iv only had it for about a year. Im currently going through cyclo. I hav lost all feeling and some movement in my left hand and have lost all feeling with muscle weakness in my left leg. My hands and feet burn, feels like im walking on egg shell most of the time. Im also very tired but have a small child and work full time so I end up completely crashing at the weekend. I live in Bedfordshire so not to far

[Starburst]

hi mags

i can sympathise totally with you as when i first went downhill our children were very small - we had 3 older ones and also had young twins. i was bed ridden for a couple of months before i was admitted to hospital for tests and treatment. i work from home and my husband works long hours so really it was a dark stage in our lives. that was 6 years ago and now the oldest is 19 and at uni and the youngest ones are 9 with 2 in between. the medication i take has really helped me to at least get out of bed during the day if only for a few hours. i have to pace myself and can only last 5 hours before i need to sleep again in the day. my children have adapted but still sometimes moan when i go to bed although often lie next to me so at least they are near me.what meds are you on at the mo ?

take care

lynne