I had horrible PG (skin disease) that wasn't responding to traditional treatment and I was very close to losing my leg. My very savvy and keen resident dermatologist found a small study (I believe from Switzerland) that showed improvement for PG. Within weeks my skin started granulating and within 6 months my skin had fully healed. However, in that time I began to notice an improvement in my UC so my derma continued to use it after PG cleared until such time as it had to be transferred to different GI's. I think I've been to 3 different hospitals in my city to keep it up. As I mentioned, they cut my dose due to cost and its off label use for UC. I can still use the PG as a loophole to continue using it as a preventative measure. At one point when I was severely flaring - 40x day I fought for my original dose and within 8-10 hrs my bm's were cut in half. It's truly lifesaving. But it's a commitment. I spend 7-8 hours in a hospital chair for treatment - now once a month. For PG it was 3x month.
I had significant side effects at first - severe migraines, nausea, fatigue - but I was also a terribly ill person. It was worth it though. I only have mild headaches, nausea (I use zofran) now; maybe for a day; maybe no side effects at all. I had to have a port implanted though as I've run out of veins.
Last year there was a gentleman on the CD side that was trying to get it. He had the support of his GI. Unsure if he ended up on it.
You really need a GI willing to fight hard for you to get it. I'm exceptionally lucky with the many GI's who had compassion and were willing to bend the rules to treat me with this - at no cost. As successful as it's been for me I don't believe any of my GI's have prescribed it to their other patients. It's simply too cost prohibitive and takes a lot of nurse power to administer.
I really hope you can get it!
BTW I just noticed on the Hailey's letter thread that Fatherof3Boys' wife uses IVIG. Perhaps he is in the US and can help you.
Post Edited (U B Tough) : 1/8/2021 10:48:09 PM (GMT-7)