Hello Chrpybirdy,
<div>I have CIDP as well and understand your dilemma. Argenx has ongoing studies for use of efgartigimod alfa (Vyvgart)for use in CIDP. They also have a version with hyaluronidase. It antagonizes the neonatal Fc receptor reducing circulating Ig including autoantibodies). The thought is it will reduce or eliminate the bad Ig that attacks your nerve junctions that causes the untoward effects caused by CIDP. The hope is it will be equally as effective as Ig (IV or SubQ) or better. You are correct that Vyvgart is currently only approved in the US for Myasthenia Gravis (MG). You might want to contact Argenx USA to gather more information.  I believe many of us are awaiting to see what results the phase two trials show and see it move into phase three. You can also reach out to one of the physician specialists at a center of excellence listed on the GBS-CIDP Foundation web-site and email them a question regarding this novel agent.  Good luck on your journey and hopefully this is helpful.</div>
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<div>Respectfully,</div>
<div>Dave Tuck, PharmD</div>

Harry,
I originally began IVIG EVERY 4 weeks for three months. I was good for the most of 3 weeks with little fatigue. However, when I got to week 4 I was a “slug.” The fatigue and tiredness were extensive as well as increased balance issues. My discussion with my neurologist was increase dose or reduce interval. We chose to reduce interval to every 3 weeks, which has been ideal for the past two years. I do experience some fall off the last few days before my next dose but nothing extreme. I share this as a discussion point for you and your physician on direction to take.

Micah,
That is a great question! I will answer as a clinical pharmacist and then as a patient. The first question is what will be most available without interruption. Steroids have been shown to be effective for CIDP, however you will have to see if you tolerate side effects of fluid retention, mood swings, potential sleeplessness, nightmares, and possible nausea. IVIG and Plasmaphoresis are other options. However you have to deal with inconvenience of administration and time for infusions. IVIG tends to have side effects as well that in many cases are tolerable but include hypotension, headache, dizziness, and allergic reactions. Hydration helps minimize the headache and your infusion nurse will have medications to help counteract any adverse effects. The IVIG shortage occurs various times each year and my understanding is that shortage is coming to an end. I have been receiving Gammagard for over 2 years and had to receive two cycles of Gammunex C until the Gammagard came available 3 weeks ago. As a patient I have done well with IVIG and never opted for the steroid option secondary to another autoimmune disease I have and did not want it flair once off steroids. Everyone responds differently to the various therapies and the ideal one for you has yet to be determined. IVIG for me greatly reduces my fatigue and provides “spring” to my step. Unfortunately none of the therapies, for the most part cause muscle atrophy and loss to return. The best therapy has been 60 min of cardiovascular work via elliptical or recumbent bike 5-6 days a week along with a trainer 3 days a week for an hour to adapt other muscle groups to adapt for the deficit from loss of other muscle groups. That has been my experience, and IVIG has been the best option for me. Best of success on whatever path you choose. Despite the disease wants one to sit and do nothing the reality is exercise and muscle adaption energizes you and will keep you walking longer. After 2 years I have progressed to use an AFO for foot drop due to loss of dorsal flexion (inability to pull feet up and use of trekking poles for longer hikes/walks wherebtwrrain is constantly changing to help my balance. Hope this is helpful.