Hey everyone,

Just had some questions regarding IVIG.

-what brand is best or most popular for SFN?
-are there any permanent side effects?
-any tips to ease side effects?
-do you need to take time off of work after infusion?
-over how many days is the infusion and how often should it be repeated?

I want to push for IVIG with my neuro since nothing seems to be helping.

Thanks!

There are many brands of IVIG. I use Octagam, but I have also recently used Provigen. For neuropathy, the dosing is much higher (than for those with immune deficiency---I have both). The standard dose for neuropathy is 2 grams/kg. Some doctors do a 5 day 'loading dose', other do 3 days and some just start with once a month infusions.

Therefore, Provigen is one of the brands commonly used for neuropathy, because the concentration is higher, so it takes less time to do a large volume. Right now it takes me 7 full hours to infuse 70 grams of Octagam each month. When I had to do my infusion at the hospital a few months ago, they only had Provigen and because of the higher concentration, it only took about 3 hours to complete the same 70 grams. If you use one of the lower concentrations (like Octagam), then you may have to split the infusion into multiple days because you just wouldn't finish before the infusion center closes. But your doctor knows all this info, and will Rx the product he feels best suits your needs and also what the infusion center has on hand.

There are side-effects and some can be serious. Most common is headache...can be severe headache. If this occurs, you need to tell them immediately so they can slow down the rate of infusion. Most side-effects are rate related so all infusions start out VERY slow and gradually increase in rate as the you go along. But other side-effects are flu like symptoms, chills, drops in BP, etc. The serious side-effects can include aseptic meningitis. I got this once (it's actually quite rare, but does occur sometimes). It bought me a week in the hospital and a full month of recovery after discharge. I also stopped infusion for several years. BTW, that aseptic menigitis occurred after NINE YEARS of IVIG, so don't think that if you do fine for 6 months that you won't have a reaction. This is a blood product and reactions can happen at ANY time,even after many years of use.

The best way to avoid side-effects is hydration...just simple hydration. Lots of water, gatorade, etc before the infusion helps greatly to curb the headache and chills, etc. They typically also prescribe pre-medications to help avoid side-effects/reactions. These pre-meds include Benadryl, Tylenol, Zyrtec, and IV steroids (Dexamethasone or Solu-Medrol). I receive ALL of these before each infusion.

Everyone is difference as for how they feel afterward and whether they need time off to recover. I typically need a couple days to regroup and bounce back. I get weak and/or flu like symptoms on the 2nd or 3rd day (when MOST reactions occur and when steroid wear off) and also some mild headache (but my pre-meds do a pretty good job of keeping headaches to minimum and also itchy face/lips (that I used to get but don't after adding Zyrtec to my pre-meds). Some people are perfectly fine after their infusion, others are like me and need a couple days. You should plan on taking a couple days off until you know how it affects you.

If you do a higher concentration product, you can complete an infusion in one day...and it's usually repeated once a month. Sometimes lower doses are done and then repeated every 2 weeks. Again, it depends on what your doctor orders.

I think that about covers your list of questions. I will say that you will know in a few months whether it will help. It doesn't take 6 months of infusions to see results...BUT it could take that long (or longer) for FULL results. So you should see at least some improvement (IF it is going to work) within 2-3 months.

Thanks for the detailed info!

The only thing I would refuse is the IV steroids because for some reason, I don't think my body likes them. If I do end up getting therapy, maybe i'll take a leave from work while I test the waters.

What autoimmune disease were you diagnosed with? Did you have a punch biopsy? I apologize if you posted this on another thread that I may have missed.

I don't have any autoimmune diseases that I know of. My symptoms were from what I can tell, an adverse reaction to surgery. The biopsy showed decreased density.

Thank you for the update! You will have to keep us posted about the IVIG.