Anyone on IVIG for Peripheral Neuropathy?

[kyellott]

I saw a Neurologist today who did an upper and lower body EMG; he diagnosed me with Peripheral Neuropathy.  To make a LONG story short, I have suffered from tachycardia for several years and 9 months ago went into cardiac arrest and now have a Pacemaker (I'm 30 yrs old!!).  My new Cardiologist diagnosed me with Pots Syndrome (posterior orthostatic tachycardia syndrome) which can be caused from Neuropathy.  My Rheumy thinks that my immune system is attacking my nerves which is the reason form my visit to a Neurologist.

The Neurologist said that I am in the beginning stages of Neuropathy and thinks that my mixed connective tissue is causing it.  My Rheumy started me on Methotrexate 4 weeks ago after my Pots diagnosis; the Neurologist said he wants to let my Rheumy treat me but if I don't improve or get worse he will put me on IVIG treatments.

My mom has been on IVIG for several years now to treat her mixed connective tissue and has felt better ever since.  My thoughts are that maybe I should ask to go ahead and start the treatments before I progress.

I appreciate any input you can provide regarding your treatment.

Thank you!!

[Piebird]

I have had IVIG and have PN.

The IVIG went really badly for me. Sometimes that happens. I have heard differing stories here.

However.... My neuropathy has not progressed since that time.

Not sure if it was the IVIG or my B12 shots that stopped it progressing. Have you had your B12 levels checked? Without the injections my levels are in the low but acceptable end. You can not overdose on B12 and it helps me a TON to be up at the upper end of the scale.

If I was ever to try IVIG again, I would not make the mistake of leaving the hospital with a screaming headache and vomiting. The ride back in the ambulance is not fun.

[kyellott]

That doesn't sound fun!!

One of my doctors did mention my B-12 was normal but low in the normal range, that was about 4 months ago.

My mom got bad headaches and nausea with her IVIG but found that if they slow down the dose she does good so now they give it to her over a 2 day span.

Are you taking Lyrica or anything else that helped?

[anita]

IVIG has proven to be somewhat helpful for neuropathy caused by AI disease.  You are correct that slowing down the dose will help reduce the headache.  I did IVIG for 9 years.  Unfortunately, I got a severe case of aseptic meningitis from the IVIG and haven't had it since.  However, I have given thought to trying it again since all other treatments (Lyrica, Neurontin, Cymbalta, the list goes on) have failed.

[irish]

You will most likely find that your insurance will not cover the IVIG unless you have tried an oral drug to curb the autoimmune attack on your system. I am wondering if the doc has suggested any other drugs. I thought I heard that cellcept was good for the neuroapthies. Maybe I am just confused.

I think I would advise you to go with the oral med first and see what happens. Many times the orals meds kick in much faster than the literature says. I am on IVIG for 6 years for another autoimmune disease. I can't take any oral drugs due to low t-cells and my thought has always been that at some time my body may decide I can't tolerate the infusions anymore.

If you can do the oral and have help and save the IVIG for later I would aim for that. Good luck. Irish

[kyellott]

Thanks for everyone's input.  I think I'll give the methotrexate a try first.

Irish - I've tried Gabapentin and Lyrica before I was diagnosed but had to stop both due to side affects...  The only medication that the Neurologist offered is pain medication to which I declined.