NeuroTalk Support Groups - Have you tried IVIG for CRPS?

Dear Debbie,
I wonder if you know the name of the brand of Iv Ig that you received, as well as the amount. I started with 15 grams of Privogen every 21 days. After I began receiving 20 grams of Privogen brand Iv Ig every 21 days, it took about 6 months to work. After 35 years living with RSD/CRPS that had spread throughout my body, I am now free of pain and other RSD/CRPS symptoms. I still feel rotten on hot days. I need to wear soft but supportive shoes and ration walking upon hard surfaces or for extended periods. At least I can tolerate shoes and socks. And, so long as I don't overdo on my feet (where CRPS began and was the most advanced and painful in my body), I live pain free and without any of the medications I once desperately needed to manage neuropathic pain, cramping, dystonia, involuntary movements, etc. My 32 year old daughter had advanced MS. She was in a wheelchair and could not see well enough to drive or read. She also received 20 grams of Privogen brand Iv Ig every 21 days. Now, she reads, drives and walks again. Her doctors can no longer tell by physical exam that she has MS!!! I have to wonder how important it is to receive enough Iv Ig for a long enough time. I KNOW that Iv Ig levels fall off rapidly after 2 weeks and that some people may need infusions every 2 weeks. For me and for my daughter, a 4 week interval was too much. And, I also KNOW how important it is to use a well formulated brand of Iv Ig. I KNOW that brands of Iv Ig formulated with sucrose are not as safe as those formulated with saline, like Privogen. My doctor is an infectious disease specialist. He has been giving Iv Ig treatments for 20 years and has never had an adverse event using Privogen. I'm interested that your infusions took 4 to 6 hours. I continue to get them and they take 2 to 3 hours. I always feel sad when I hear about someone like you who most likely did not receive enough "juice" for a long enough period of time to make the needed difference. My daughter and I continue receiving the amount (20 grams) the time interval (21 days) and the brand (Privogen) that work to keep us well. I wish you good healing!

Quote:

Originally Posted by debbiehub (Post 873652)

I had ivig ,,,I have full body rsd and small fiber neuropathy in my leg from the rsd, my insurance paid for most of it. It was done in my neurologist infusion suite, takes about 4-6 hours. I had it done for 4 days in a row once a month for 5 months. It didn't do anything for me. Like everything else....I am really hoping the tDCS works!,, oh and you may need a cardio Clarence..cause the ivig is thicker than tour blood so they want to make sure your heart is ok,,,

Debbie