Nerve damage, tremors, shaking

How do you know if you have nerve damage with mpa vasculitis? Is that what causes tremors and shaking ?

[kitkatmum]

Hi, not sure I can help as I have GPA vasculitis but I’ve been left with tremor in my fingers and some muscle myopathy in legs as they shake at times. I’ve been told it’s a mix of what I have and the steroids. Hope that helps??

[Hidden in reply to kitkatmum]

Thank you for your reply. Much appreciated. I will ask my consultant in two weeks. This disease is a nightmare.

Thanks

Johnny

[Chris-Bromsgrove]

Hi, If you are in the the initial stages of treatment for your MPA you may well be on a high dose of Prednisolone. It did give me bad hand tremors. It made it quite difficult to write. That gradually subsided as the dose was tapered. The nerve problems normally start with pins and needles in your fingers as a result of the blood vessels supplying the nerves being attacked. Chris

[Hidden in reply to Chris-Bromsgrove]

Thanks Chris.

I’ve got down to 15 on pred and still to have two more infusions. This disease is so unpredictable on a daily basis. Appreciate your reply.

Thanks

Johnny

[Tbrz]

Hi, I have GPA and I suffered nerve damage in my fingers my feet and my upper left leg. My upper left leg gets really painful if I stand, walk for any length of time as well as going numb, a really weird sensation. My fingers are numb at the tips, but I also get the shakes badly if feeling low or again do too much, holding a cup of tea is interesting at time and writing is very difficult. My feet are the worst, they are very painful and I suffer with them terribly - walking any distance is very painful and if I do anything extra they feel like they are on fire at night and they twitch and send spasms all up my leg. A very weird and horrible sensation and wakes me pretty much every night, which keeps me up till about 3 - 4am in the morning. My consultant said this is a long term issue from vasculitis damage, so it may get better, but also may have it forever . Vasculitis has been life changing in many ways and has affected what I can do - good luck with everything.

[michichgo]

Hi Johnnyboy.

I was diagnosed with MPA in 2013, with kidney involvement. It has since expanded to include a host of other systemic problems, requiring numerous meds.

I take Gabapentin for neuropathy and it works well in diminishing my pain.

As to the tremors, they decreased substantially once I came off Prednisone (I currently take no Pred). Nonetheless, a few times a week, I still experience hand tremors, which don't seem to correspond to any foods or meds. They simply come. And then they go. My penmanship has gotten a bit wonky but I muddle through!

Best wishes. Be well.

Michele

[Hidden in reply to michichgo]

Thanks for your reply. I guess this is all new to me and proper weird. More weirdness to come I guess. You take care.

Johnny

[brown136]

reading other correspondents i have GPA which effected my feet you could say pins and needles however been told with gpa or the diabetes caused the nerve damaged. told by consultant nerves take a long time to heal or may never. however taking Gabapentin does help me all the best

Ian

[Hidden in reply to brown136]

Thanks for the reply Ian. So many different things go on with vasculitis. I’ve just been told by rhumy to self isolate for 3 months because of my illness and current treatment. 😢

Thanks

Johnny

[cgarmstr]

I have GPA and had a flare recently, so was back up to 30mg Prednisolone, tapering down to 20, 10 and now 7.5mg. At the high doses the hand tremor was very bad - couldn't write, use a computer mouse or type. Sleeping much better too.

Much better now I'm down to 7.5mg. I was hoping to get off steroids altogether, but I'm ANCA positive and reducing from 5mg to 4mg last summer was probably what triggered the flare.

[Peddy1968]

Hi I have GPA and have to put up with severe nerve damage in both legs and feet and hands.

It’s very strange as I’ve lost the feeling in my legs and feet and I can’t feel the floor but the burning pain is ridiculous.

The hands aren't so bad although the finger tips are numb which is down to neuropathy.

On massive amounts of meds for pain but still have the constant burning, pins & needles feeling.

Along with this I receive nerve jumps/spasms at any time.

[Hidden in reply to Peddy1968]

What a nightmare mate. I feel for you. Now I’m locked away for 3 months self isolation 😱. Thanks for your reply and take care.