Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I just wanted to share that I have SLE, Sjogrens, Occular Myasthenia Gravis and MS. I have been on 50 grams of IVIg ( its an infusion given over 4 hours at my home by a VNA weekly) I had a port o cath put in my chest 1 1/2 year ago for the weekly treatments. It is because I have multiple autoimmune diseases. I want to share that It has really helped me. I have no side effects at all, do not get sick from the treatment each week, and when I tried to go down to every other week, I noticed a tremendous difference, I realized it was really helping me and I needed to go back to weekly. I know there does not seem to be much talk about it, so I wanted to mention it. It is a blood product, the antibodies and protein only from donors, and has improved my day to day quality of life, I was very sick and hopeless, and this treatment had been a godsend for me.
If anyone out there is also on IVIg, I would love to hear from you and about your experience.
I hope this is helpful for someone :)
Peace to you all,
Mary
If anyone out there is also on IVIg, I would love to hear from you and about your experience.
I hope this is helpful for someone :)
Peace to you all,
Mary
I'm glad you found a treatment regimen that is working well for you.
I'm on immunoglobulin infusions (I guess it's IVig) monthly to bring down my antibodies to help me get a kidney transplant. Mine are so high that it took me 8 years to get my first one. Unfortunately it failed 2 years ago so I'm trying for another one. I had my first treatment last month and I'm due again next week. I agree, I had no ill effects at all. I didn't notice much difference in my overall health though. I'm glad you're doing so well on it and that you shared your success. I never equated it to a treatment for lupus but it does make sense.
Good luck
Dale