The Lupus Forum banner

1 - 6 of 6 Posts

·
Registered
Joined
·
17 Posts
Discussion Starter · #1 ·
hi
I am experiencing a flare right now and have been very tired. It feels like a workout just to shower and dry my hair. The problem is that life has to continue regardless of how i feel. I take frequent rests and that does help. But i was wondering if anyone has any experience with perpheral neuropathy its causes and relationship with lupus. It is active when i am not feeling well and i wonder if there is actual damage to the nerves long term. any info would be appreciated!!!!! thanx ter
 

·
Registered
Joined
·
15,684 Posts
Hi ter,

Peripheral Neuropathy is suffered by some Lupies and I'm one of them. Lupus has a particular like for our nervous systems for some reason. In some it's the central nervous system (brain and spinal cord) in others it's the peripheral nervous system (every other nerve besides those in the brain and spinal cord). In an unlucky number it affects both systems :(

Here's some more info:

Peripheral Nerve Problems
About 20% of people with lupus have peripheral nerve abnormalities that show up on certain tests - electromyograms (EMGs) and nerve conduction studies. These are electrical tests of the nerves and muscles. But only about 10% of people with lupus actually have symptoms - called polyneuropathy or peripheral neuropathy. In most people, this is not a major problem. Sometimes it may cause weakness of the hands or legs. Or it may be a sensory neuropathy - abnormal feelings - causing numbness, tingling, or burning of the hands and feet. No one really knows what causes this painful neuropathy. It is treated with painkilling drugs such as gabapentin (Neurontin), amitryptyline (Elavil) or nortryptyline (Pamelor).
Usually, neuropathy is symmetrical - affecting the same part on both sides of the body. But 3% of people with lupus have non-symmetrical neuropathy. It's patchy - a little bit here, a little bit somewhere else - and called mononeuritis multiplex. That's the type that may be caused by vasculitis. It may be a sign of active, inflammatory lupus and need aggressive treatment with steroids and other immunosuppressant drugs.
http://www.hss.edu/conditions_14294.asp

Mine fits into the Mononeuritis Multiplex type which makes sense because I did have problems with Vasculitis affecting my brain at one time. So you can see where there are various causes, presentations and solutions, that's where your Neuro comes into it and along with your Rheumy can devise the best plan of action for your case.

Which medications are you taking?

Without assessment by a Neurologist you really won't know if it's causing you any permanent problem until it is really obvious. It's better to be assessed and monitored every now and then even if you feel the symptoms subside once your flare is over.

It can creep up on you.

A loss of sensation and/or movement can progress in some but it seems in others it goes away when the flare stops.

I find that despite being on Plaquenil and Imuran I am having problems with it all the time now (not like before when I just had it when I flared) and am currently being followed/assessed by my Neuro.

love
Lily
 

·
Registered
Joined
·
15,684 Posts
Hi again ter :)

I just read an old post of yours where you had an EMG and it showed you had some loss. If that's the case then they may need to reassess your medication regime. Have they put you back on Plaquenil ? That would be a good first step if it's actually the Lupus causing the PN , and depending on how that goes then you may need to start some of the stronger medications so you don't incur any further damage.

love
Lily
 

·
Registered
Joined
·
17 Posts
Discussion Starter · #4 ·
They did put me back on the plaqunil and also neurotin. I had not been taking the neurotin because i really have felt like a normal person for a few months. I am a little worried about the drowsiness side effect when i feel so exhausted anyway. If anyone takes this i would appreciate info on the sideeffects they are have. I have an appointment with my rheum on the 27th and the conclusion of all the testing last summer was that there were no other causes so it was safe to say it is lupus related. I guess i will see if she wants me to see the neuro to.
 

·
Registered
Joined
·
17 Posts
Discussion Starter · #5 ·
Lily
Thank You For The Info It Is Very Much Appreciated. It Is So Nice When You Feel Like Crap And Like Sharing To Come To The Computer And Have Someone Take The Time To Care!!!!! Thanx Ter
 

·
Registered
Joined
·
15,684 Posts
Hi ter,

I'm glad you will be seeing the Rheumy soon so this can be discussed. It's possible that they may start you on something else to help control the PN so good luck with the appt.

I was on another anti-seizure med for my PN but it was giving me some side effects (worsening tremors when I already have them) so I've just switched over to Neurontin. It's a bit early for me to comment on whether it's going to make me drowsy, as I'm only on 100mg 3 x daily right now. We are going to try and get it up much higher than that over time.

There are a few here on Neurontin and hopefully they will come along and give you their experiences. What dosage did they have you on? Maybe that was more the problem, I know one of our members can't tolerate anything more than 600mg daily it makes her too sleepy.

Good luck at the Rheumies and let us know how you get along, I personally would especially be interested as I am going through the same thing myself.

love
Lily
 
1 - 6 of 6 Posts
Top