Reply To: Is there a maximum IVIG dose?

There is the suggested dose pattern, but I haven’t seen any maximum dose out there (but I’m sure if anyone has a max its your insurance company). The standard is to do the loading dose 2g/kg div 2-5 days, then drop to 1g/kg div 2-5 days typically every 4 weeks. Based on patient response the time usually gets adjusted forwards or backwards first. Based on degree of disease seen during the diagnostic process (EMG, LP, MRI) the doctor may choose to stay at the loading dose longer before dropping down. The amount of flexibility in timing and dose is sadly also affected by insurance. Based on clinical response after 3-6 months doctors will either stick with IVIG (assuming positive results they will keep trying to dial it in to find an ideal pattern, add steroids with the IVIG for added benefit, or change brands of the IVIG of there seems to be less benefit than expected or more negative side effects than expected), or leave IVIG to try Plasmapheresis (especially if symptoms are continuing to worsen), convert to subcutaneous IVIG (especially if IVIG is showing benefit but too many negative side effects, or too much of a rollercoaster between infusions, since this is meant to be used about once a week at home), or trying immunosuppressants (such as Rituxan).

I have had benefit from IVIG. However the area of nerve damage in my body keeps spreading, like we haven’t yet caught up to the speed of the disease. I was approved to do the loading dose level every four weeks for the first year by my insurance. At the six month mark I can tell that I start significantly relapsing at the start of that third week, but because of insurance we can’t push it forward to match my crash. What we tried this month was starting my IVIG with 2g of Solumedrol to try to get an extra jump on the worsening symptoms. If this doesn’t work, my Neuro wants to try it one more month with Solumedrol again and then take a break from IVIG to do an inpatient round of Plasmapheresis for 5-10 days. He indicated his preference is to then return to IVIG. If it still fails then he will discuss staying on Plasmapheresis longer (for some patients indefinitely).

So there are still options for you and your dr to discuss. If IVIG has made improvements, I’d probably try a steroid booster first and a brand switch second. If still no meaningful difference I’d probably try subcutaneous next if I felt like IVIG was still helping me but it’s just not able to be done soon enough between infusions to keep me feeling leveled between infusions. If, though, I felt like my symptoms of nerve damage were spreading in severe or widespread ways (such as having bladder, colon, stomach, swallowing issues; or significant difficult using all four limbs) I’d advocate for Plasmapheresis until things improve enough to return to IVIG. If your Neuro isn’t aware of the other options, or unwilling to provide them, it may be time for a second opinion with someone else who has more experience with these non-IVIG options.

Good luck.