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Old 12-20-2009, 04:45 PM   #1
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Question IVIG being used for autoimmune disease and MS

I am 47 years old and have a progressive form of multiple sclerosis as well add is a large number of autoimmune diseases including Behcet's disease, systemic lupus, systemic scleroderma, mixed connective tissue disease, antiphospholipid syndrome, anti-cardiolipin antibodies, hasimotos, autoimmune hepatitis, multiple sclerosis (also being called an autoimmune disease); autoimmune blood disorder causing anemia, low platelets and hypecoagulation problems.

I have failed most of the treatments for MS and have a form of MS which is rarer known as progressive relapsing MS meaning I continue to progress but I also continue to have many relapses, often more than 4 per year. i was diagnosed with MS only 5.5 years ago. I have failed and cannot take solumedrol and other prednisone treatments, interferon (relentless high fevers), novantrone (very low whiteblood counts and abnomalities), and a cardiac allergic reaction to tysabri. Over the years, I've been given IVIG for MS at different times. Because my autoimmune diseases are now worsening as is my MS, my doc has put me on a monthly treatment at home of IVIG; meaning the first month of 2 consecutive days of 2gm per kilogram 2 consecutive days and then 1 gm per kilogram every 3 weeks. (some docs say 3-4 weeks but he is taking a more aggressive approach to this.)

I have many other medical isues and intolerances to treatment and the plan and hope is that IVIG will put my autoimmune issues and my MS relapses into some form of remission.

Has anyone been given IVIG for autoimmune hepatitis, scleroderoma and lupus? I can't take prednisone and my docs are concerned about imuran and other disease modifying rheumatic medicines with my very abnormal blood counts and very high liver enzyme issues and other problems.

 
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Old 12-27-2009, 05:11 AM   #2
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Re: IVIG being used for autoimmune disease and MS

I have been getting IVG for the past three years monthly 36gm per month. It has kept my infections under control, but has not helped the Lupus or the mixed connective tissue disease. I am currently taking Plaqunil for the Lupus and mixed connective and actually felt good until a kidney infection hit. I do not have MS and really know nothing about whether it will help. I hope the IVG helps, make sure they run the IV slow they tried to speed my infusion one month and I had a reaction and had to be given seroids, which in turn lower the immune system.
I hope the IVG helps. Have a healthy happy New Year.

 
Old 01-04-2010, 07:30 PM   #3
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Re: IVIG being used for autoimmune disease and MS

Would IViG be considered for my Chrug-Strass vasculitis? I have had the same sinus/larnyx infection for over 3years. The docs keep RXing the same old Ampicillan. I am allergic to most all of the antiboitics. It knocks it down for 2-3 days, then it roars back. Along with all my other problems this is just taking all my strength. I see where it is around $10K per month. I don't believe my insurance would cover it unless the FDA says it is for vasculitis specifically, then they would probably figure out someway to say no.
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Lupus, MCTD, Vasculitis, RA, Radiculopathy, T10 &12, L4&5, S1> DDD & Facet Arthritis, OA, HTN, Fibromyalgia, and Hashimotos

 
Old 01-07-2010, 04:36 PM   #4
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Re: IVIG being used for autoimmune disease and MS

i am also on plaquenil as wel as colchichine.

 
Old 05-17-2010, 06:17 AM   #5
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Re: IVIG being used for autoimmune disease and MS

I have been on IVIG every 21 days for 5.5 years for C.V.I.D. (an immune disorder) as my body does not produce antibodies and without it I get sick. I have recently had a Pulmonary Embolism and they have found that I have Antiphosopholipid Syndrome and probably Lupus. I have so many health issues due to the CVID, GI, pain with walking, balance issue, the list goes on and on.
My point here is that the IVIG really help me, I do have an allergic reaction to it so I am infused at the hospital and given Benadrl at the same time, I feel really crappy (vomitting, headache for 2-3 days) but then I have a good 2 weeks where my pain is better, fatigue is better.
Now that I have the clotting disorder and on so much blood thinner to break the lung clot he can not tell me 100percent about the lupus, but is 95% sure.
I live here in Canada so my IVIG is paid for I really feel bad for those of you who have to depend on insurance companys to approve you for this
If you can try it give it a while for your body to heal, it took mine a good 6 months of treatment to stop the constant infections ect.
Wish you luck
Tracey (Newbie to the board)

 
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