MPA and peripheral neuropathy

[cambs13]

Hi recently diagnosed with MPA after a very convoluted illness. Being treated so far so good, fingers Xd but have peripheral neuropathy in both feet up right leg and right hand, this is such a nuisance, willing try anything to improve it. Painful and impossible at times, have just been started on Amitriptyline, low dose but makes me feel awful in the morning anyone got any experience with this med for neuropathy. Ta

[hannesjooste]

I live in South Africa and was diagnosed with WG with peripheral neuropathy about 10 months ago - exactly the same symptoms as yourself. I understand your frustration but keep up your spirits - it gets better but very slowly. I spent almost a month in hospital whilst the doctors were trying to diagnose my problem and then treat me with massive infusions. Out of hospital I stated off with the standard Cyclophosfomide/Prednisone treatment, now on Azathioprine with 10 mg Prednisone daily. I also take Lyrica (Pregabalin)

75 mg twice a day and one Trepilene (Amitryptyline) 10 in evening with 10 mg Zolpidem (Lactose monohydrate). The Lyrica is .to help with the nerve pain that you experience and the latter two for a restful sleep. I also tried higher doses of Amitryptyline that left me feeling terrible and tired the next day.

I am slowly getting the use of my hands back - muscle action is almost back to normal but the numb/dead/painful feeling in the fingertips are still there. I have started working with tools again - thankful for that. My feet were swollen , also the right lower leg - this is almost back to normal. My feet are still numb/dead/painful and I cannot walk too far. I have to force myself and hold onto the hope that things will get better.

I also use a silicone insole in my shoes and wear thick mohair socks (that diabetics use) to make the pain in my feet bearable.

Hope it helps

Regards

Hannes

[cambs13 in reply to hannesjooste]

Thanks for your reply, once I was finally diagnosed with MPA treatment was fast and aggressive, and so far so good. Early days yet as mid jan this year. The neuropathy is such a big deal and it is this that is the constant bane of my life. I do manage to sleep (with the occasional long sleepless night thrown in), I found having an electric blanket on a. Medium heat throughout The night helpful, just use a single blanket running along the bottom of my bed. It's interesting and helpful to hear from others as such a weird disease and for all intents and purpose I look "normal" and so do my hands and feet and think unless you've had it you just can't understand the. Impact it has on a day to day basis. I am getting better in using my hand that is effected but still don't trust it and if I put it to more use it becomes painful and stiffer.

Interesting regarding your meds my consultant has mentioned Pregabalin but to start with Amitriptyline first am only on 10mgs at night giving me a corker of a headache during the night, but to be honest also on loads of other meds, who knows . Good to hear that you are back doing normal things, my consultant gave me a rough timescale for neuropathy of around 9 months for my hand and around 2 years for my feet. Lets see. Am going back to work in a weeks time, I only work two days a week and interested to see how I can adapt. Take care Pam

[LynneJ Vasculitis UK Volunteer]

Hi there

My story is the same but I am a bit further down the line. Diagnosed in 2010.

I am now in remission on Azathioprine.

I still take paracetamol and 2 tramadol if we are going out. In my case the Amitryptaline made the pain worse. I tried it twice and gave up. But everyone is different.

My advice is be patient it is a very slow road for the nerves to mend but it does improve, hard to believe at your early stage but don't loose hope.....slow but sure.......

I also love the silicone insoles and thick socks.

It is now more of a nuisance, I have the use of my left hand back but like Hannes still have a bit of numbness in the finger ends. The silly thing is it is a bit better if I keep my mails short!

I can type again and for the first time on Saturday I was able to wear PROPER shoes!!!!!! I have spent the last few years in trainers, so it was a big deal for me. My feet only bothered me when my ankles got a bit hot and started to swell.

The best advice I had was from the physio who said as I had nerve damage in both feet, not to use a stick as it would make me lopsided. This has forced me to use them equally. I am lucky in that I have my husband to hold on to! Poor thing!

I would try to keep going as much as you can because you loose muscle quickly when you are ill.

My full story is on my profile.

Hannes....... good to hear you are improving.......

Lynne

[Coppernob]

B12? I do daily injections of methylcobalamin. Really helped with neurological symptoms (of APS/Sjogrens). As does Plaquenil - but that may not be routinely prescribed for vasculitis.

[Pollie]

I've had some neuropathy for about 35 years, due to Churg Strauss. I think the severity and "recovery" may depend on age?? My onset was at 35 years and was just one of many symptoms. After treatment on Prednisolone and Azathiaprine, I gradually regained a lot of musce control an both feet/legs and right hand...but I've never been able to run since then! and things have never been "perfect". I did ,however, learn to drive with numb feet!!

I've had a flare up since then (a whole other story!) ,but I would suggest you need to discuss with your Physio?/ Consultant whether regular exercise would help...As Lynne said..it's easy to lose muscle tone very quickly. Where I live there is an excellent yoga group for people with a range of disabilities..this was a huge help for me and I have now "progressed to "ordinary" groups and not just yoga, if that's not your thing! There may be something in your area which would give you the confidence you may need.

But all this does take time!!..Good luck

[cambs13 in reply to Pollie]

Thanks for your response, I do feel that I have already lost a fair amount of muscle tone and have some wasting. I was unwell for quite a few months prior to diagnosis and the start of my treatment. Sad really as just got back I into aqua aerobics and using the gym with a trainer, and had to stop it all. Once my IV cyclo is finished will resume my aqua and when feel stronger will get back to the gym. Can't wait to be truthful but want to get this initial therapy sorted. Good to hear other people pushing through. Sorry to hear you had a flare up, but hope all behind you and back on course. Thanks Pam

[Wellsie]

My neoro conditions left me with a complete conduction block and paralysis in my L ulnar, R ulnar, L radial, R sural and several lumbar nerves. I had partial blocks in my L and R median nerve to boot. Whilst I have PAN and not MPA, the cause and effect are shared across both systems.

I was ramped up to huge doses to Amitriptyline but really did not get on with it all, it left me drifting and lethargic. I deal with pain relief now with drugs such as tramadol and morphine, and these work even thought they're not supposed to with nerve pain.

I was as surprised as anyone that chemo actually helped repair some of the damage and removed the full block to restore some conductivity back in the nerves affected.

Patience and practice are the key to nerve recovery and neuropathy; re-growing nerves repair very slowly, only about 1mm a day or so, so if you know where your conduction block is, measure to the end of the limb and that might help give you a clue when you might expect a recovery.

[cambs13 in reply to Wellsie]

Hi,

Thanks for that, how did you cope with both hands affected, I can kinda cope with the pain but it is the inability to have pincer movement lost, although trying as much as I can to use it just feels like three fat unweilding sausages. Did have neurophysiology testing of my right hand and both feet as they are affected plus up my right leg. Yea am aware slow repair of the nerves, have been told roughly 9 months for my hand and 2 years for my feet. Can not guarantee that the nerves connect correctly and can experience pain in the tips. Have been given Amitriptyline to start at 10 mgs and to go to 30mgs although doing 10mgs at night on alternate nights as feel so groggy and have a headache that needs paracetamol. Unsure if the Amitriptyline is just for pain or has any beneficial effect on helping the repair of the nerves. Thanks for your reply Pam

[Wellsie]

I was on 90mg of amitriptaline....

You learn to adapt to your new hands. Then you have to learn how to use them all over again when the nerves repair.

I play guitar as a hobby; I've had to learn to play twice now!

[Kazam in reply to Wellsie]

Wellsie....may I ask how long did it take to regain the use of your hands???? I lost the use of my left hand in Jan. and now my right hand.. is gone too,just this week..my index finger is about all I can use..........I've had peripheal neuropathy..mononeuritis multiplex in both feet for yrs but my left foot is now really bad....I can't move my toes or foot .I am still able to walk with a walker.....I've lost all muscle in my left hand my palm seems to have sunken in,my fingers are all bony.,,...I'm afraid the muscles in my right hand will do the same!! ,,I feel so useless,I need in home care.because I can't do anything ...my hands have no strength and my fingers don't work ..I can't hold a fork,doing a button up is impossible! I had one Ritux infusion 2 weeks ago but got a chest infection and now can't have my second infusion.... Knowing you have recovered,sure gives me some hope! Thanks Wellsie!!

[Wellsie]

My PAN was treated with cyclophosphamide. All in all in took 18 months for motor function to restore to my left hand and 12 months my right. I still have a conduction block in the ulnar nerve on my left arm. The outside part of my lower leg is entirely without feeling.

You need to see an occupational therapist. There are foam things to put on the end of cutlery to make them bulkier and easier to hold.

Atrophy of muscle tissue is fairly permanent though; atrophied muscle tissue turns fibrous. Squeeze the webbing between your thumb and index finger to see what I mean if your ulnar nerve is effected. However, this alone does not prevent recovery, only constrain the amount if strength you can regain.

Do try and be patient; I know just how frustrating it is. Give the drugs time and remember nerves only re grow 1mm/day

[Fairy-dust]

i live in the United States and have APS, but was not born with it. I have recently developed cellulitis and arthritis. My legs hurt when I walk so my Dr. Said Restless legs. My asthma has become worse. I have noticed that APS people seem. To all have these ailments. my Dr. Is sending me to a vascular surgeon to see about fixing the bleeding veins.

Is this wise?

[Webbyj]

Hi. your post came up as it’s linked to my recent post about MPA and PN.

I appreciate your post was 6 years ago but if you are still on this site please can you let me know how you are getting on now?

I look forward to hearing from you and hope you are now feeling much better than you were then!

(I was diagnosed May 17 and am in remission other than this PN and am awaiting an appt. with the neurologist )