IVIG

[NerdyChristina]

I just wanted to mention this for patients who may have GI and/or neurological involvement, that we’ve been doing IVIG and it’s been helping me improve amazingly. I was without for 8 weeks and drastically deteriorated. I’m just curious if anyone else has done this, and/or plasmapheresis. When I started struggling to walk things escalated, and unfortunately the chemo drugs only worked during the time I was on them. I’d read that IVIG was used in Europe (as is plasmapheresis), it neither appears to be really utilized in the US.

Mostly I’m curious if anyone is on it, how often you get it, and the dose if you know it. Right now I get 40g every month, and we do it 20g one day and 20g the next. Mine has to run slow because sometimes my nervous system doesn’t want to play nice. We were looking to do it every three weeks, but with a new doctor it’ll take time to determine the best option!

[DrMaggs16]

My Dad had vasculitis - Wagener's disease. They did plasmapheris on day and then 2 weeks later, iv 6 hour push of rituximab. Put him in remission for 3 years. He developed vasculitis at age if 72. He was used in a research study of a Dr. Cohen at New York/Columbia Presbyterian Hospital. Hope it works for you. They are not sure if they ate going to do same for me with the BD. I have intermittent tremors in right hand, foggy brain sometimes but MRI showed no sign of BD.

[NerdyChristina in reply to DrMaggs16]

My MRI and spinal were clear, but I was in the hospital unable to walk or feed myself because my jerking was so bad. It took high dose IV steroids, and a long taper, to help. Unfortunately the symptoms came back as the steroid dose went down. We did Rituxan, but saw no improvement. I actually flew to NYU to see Dr. Yacizi (I may have misspelled that). Then we dried Remicade and my heart almost stopped 😳.

Six months of chemo like I mentioned, which gave me nearly 7 months of legs and arms that worked. After that stopped working, the neurological symptoms returned. IVIG just further proves the nervous system issues are Behcet’s related.

[Ashveer]

Hello, thank you for this info. my son had IVIG as child for Kawasaki Disease, and this disease made his immune systme very allergy prone, and now as adult has Neuro Behcets with brainstem involvement - I will have to mention this to the doctors and see how this is helpful to him...do you have lesions in the brainstem/pons? He has, and occasional white matter lesions - now since Nov. on Azaithporine 150 MGl with maintenance predinsone 5 mG a day/ I am his mother he is 30 years young man but stressed/ill to think about this - now I am concerned about his white cell going down it is on the low side of 3. from noral range of 5....it went from 5, 4, 3, and hemoglobin lowest 127mg. concerned what doctors will do next, if they reduce azaithporine, then risk of NBD Relapse and if they don't, then low whtie cell count and he will end up in hospital for sure this is danger situation...if anyone has been in this situation, please do response..thank you for sharing IVIG info. much appreciated...

[NerdyChristina in reply to Ashveer]

Sorry for the delay, I haven’t felt well. I’ve found that IVIG helps with my autonomic issues and ataxia. I don’t have any lesions but neurology is still pretty sure Behcet’s is to blame. IVIG is a great resource for patients with autoimmune issues, especially neurological involvement. I was ready to go overseas and fight for a bone marrow transplant. I was locked into jerky movements, including my deep muscles. Even my diaphragm would spasm. Now that’s all gone. Though my autonomic issues remain, likely due to permanent damage.

[Ashveer in reply to NerdyChristina]

I am happy for some improvements, and I take note of this IVIG, my son had for Kawasaki in the past, and regrets, we should have given him these in his teen age life, and this BD would not have happened...but moving forward with your kind help...I have to suggest to our doctors and discuss with our community freinds of doctors...that is so interesting, why can't it be happening now, for same vasculitis BD, as it did for Kawasaki vasculitis of childhood same blood vessels...thank you so much for this piece...there is hope for everybody....

[NerdyChristina in reply to Ashveer]

We may have to fight hard for treatment options as BD patients, especially in countries where it’s rarer than others. IVIG was something a friend noted as a treatment for autoimmune neurological issues. I had mentioned plasmapheresis as well but IVIG was what we started with and it is helping. I’m hoping we can do it more often than we are now and see even more improvements. I hope your son, you, and his medical team find a treatment option, whether it’s IVIG or another option.

[Ashveer in reply to NerdyChristina]

Thank you, azaithporine and maintenance dosage 5 mg. predinsone, 150 MG. Azaith. is what he is on for nearly half year now...so nervous, it i is unfortunate that doctors let it go him on the first place for kawasaki disease with only one IVIG, should have made it for us mandator for more follow ups, and perhaps he should be treated with azaithporine since his first kawasaki was so severe...I see now some kids in reports are put on immuno suppr. for severe child/kawasaki disease which evolves into Behcets in unfortunate people like us...it is not a good situation at all, thank you for being here and telling us what option we can have...sincerely indebted...the brain will reattack itself, just don't know when...as a mother, you can imagine my anxiety which doc tells me to calm down...my son looks at me with hope and I look back at him...wondering what can I help you with, if I could take your pain I would...that is how it goes with us...thank you...