Diagnosed at 12, Treated 20 years later, need help

According to studies made during clinical trials, common IVIg side affects can include headache, fever, fatigue, shivering, nausea, chills, dizziness, vomiting, migraine headache, pain in extremity, hives, cough, itching, rash, and faster heart rate. Blurred vision is a more serious side affect and could be related to Hyperviscosity syndrome. In hyperviscosity syndrome, the blood becomes thick and does not flow through the body as quickly as usual. An overdose of IVIg may lead to fluid overload and hyperviscosity.

IVIg will help stop your autoimmune system from producing more bad antibodies. To my knowledge it won’t get rid of residual antibodies already in your system … that is the job of Plasma Exchange (PE).

If your neuro continues the IVIg, you should ask about lowering the dosage and/or the infusion rate. If he is correct about you having too many bad antibodies in your system, maybe PE would be a better choice for you than more IVIg treatments. I don’t understand the low dose chemo unless there is some other disease that has been diagnosed?

Being 20 years post onset and having 20-40% EMG scores seems to indicate there is some permanent Myelin and Axon damage. I’m glad to hear it’s not enough to keep you off the slopes though 😉

What city are you in? Maybe there is a more experienced CIDP specialist nearby.

I can’t say what your treatment options are, but recommend you seek a second opinion from a neurologist experienced with acquired peripheral neuropathies generally. I doubt there are many CIDP “specialists” other than those doing research on the disorder. A neurologist must be familiar with them all in order to do the differential diagnosis.

Have you considered other treatment options? IVIG does not work for everyone, myself being a case in point. After no positive results with the IVIG infusions, I tried Ratuxin with mixed results, prednisone, cellcept, several of the MS drugs and plasma exchange. Diagnosed with CIDP in ’96 (after having GBS in ’85), so have been fighting it for a long time. My current treatment consists of 2000 mg cellcept daily, plasma exchange every three weeks with a 1,000mg IV does of prednisone. This has kept me pretty stable for the past several years. As I am sure you have read on this site, everyone responds differently to the various treatments, and sometime the body builds an immunity to the various treatments reducing their effectiveness.

Regarding a neuro, you may consider contacting the Craig Institute. They are a premier spinal injury facility, but would think they would know a go to doc in Denver. Good luck.

Your closest Center of Excellence is either in Phoenix or Kansas City. See the full list here: http://www.gbs-cidp.org/home/get-support/centers-of-excellence

There are some GBS-CIDP Foundation contacts in Colorado. Perhaps they could recommend some neuros where you could get a second opinion:

COLORADO (DENVER)
Kristin Bueb
Westminster, CO 80021
(303) 881-4622
kristin.bueb@gbs-cidp.org

COLORADO (WESTERN)
Arlene and Bob McGarvin
Austin, CO 81410
(970) 835-3237

I also encourage you to go to a Center of Excellence.

Specifically, you need to find a neuromuscular specialist. A run-of-the-mill neurologist does not meet this criteria. How did GH put it? “…experienced with acquired peripheral neuropathies generally.”

In some cases, the nerve and muscle testing will neither rule in nor rule out CIDP. However, when the IVIG is effective there will be noticeable physical improvements, usually within 1-3 weeks, which may not last. EMG and Nerve conduction (NCV) velocity values may not immediately improve.

Consider this: “IVIg has been introduced as the main therapy for CIDP over the last two decades. Multiple well-controlled studies have demonstrated that approximately 50–70% of patients respond to IVIg.”

So, the conclusion could be drawn that 30-50% of patients do not respond to IVIG. You can read lots more simply by searching “cidp does not respond to ivig”

For example- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635/

You say you’ve had infusions for 7 months. How much IVIG and how often can make a difference in treatment outcomes.

I’ve heard (or read) about people getting IVIG every week to maintain status quo and prevent progressive losses.

I have not heard of vision problems with IVIG. If this only happens during or shortly after infusion be sure to check with your doctor and the Infusion center about the infusion rate prescribed for you. Huh? Some, less experienced, infusion centers will blast you as fast as possible to get you in out sooner.

Good luck