Reply To: IVIG Shortage

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.