About 5 years into this god forsaken condition and after about 25 different medications I was given 2 IVIG's. It will not come as a surprise to any of us that those 2 infusions did nothing and the disease continues its relentless deterioration of my life.
Yes I too have had several rounds of IVIG infusions.
First round was few years ago and I felt no difference in my symptoms so I stopped them.
Last year I got a new neurologist, and he felt I should try IVIG again.
I did 7 - 8 mos at home by a home nurse and I felt no difference again, so my doc discontinued them.
I have had IVIG since consistently since August and it has reduced my symptoms by 40 to 60 percent depending on the time and dosage. The liver is constantly removing antibodies and IVIG antibodies are 50% removed within 21 days and as a result many of my symptoms would return in week four. I finally convinced my doctor to go to every three weeks to see if I had more of an effect if my symptoms didn't keep yo-yoing. It turns out it is standard practice after 3-6 months to try a reduced maintenance dose so when my doctor increased the frequency of infusions he reduced the dose by almost 60%. Unfortunately this allowed my neuropathy to advance and I had no positive response to the lower dose. I have convinced my doctor to do a trial at my original dose but on an every three week schedule. Unfortunately my PN has advanced so I walk with my legs frozen straight and after 2 doses three weeks apart the IVIG is no longer loosening up my legs. I have 2 more infusions and if I don't get better I will switch to a chemotherapy to suppress my immune system called Rituximab since my PN is autoimmune mediated. If you have a chance try IVIG. From my research IVIG has the greatest chance of reversing symptoms if it works for you and your kind of PN.
I to had IVIG with no improvement of symptoms, so now my Neurologist wants to try me on Retuximab but my insurance company won’t approve it unless I do plasma exchange first, which I do not want to do.
It’s very complicated doing plasmaphoresis and I’m so,afraid of getting an infection in my central line in my chest,which is what they have to insert first.
There’s also no guarantee plasma exchange will work.
I’m trying to work with Medicare now to let me bypass the plasma exchange and just get the Rituximab.
I neurologist passed away Sep 2022 he did the EMG, nerve conduction test along with the punch biopsy for the small fiber neuropathy. . He almost had Ivig therapy approved with the insurance company. Now they will not do anything. I have been referred to Heidelberg Germany neurology clinic they lead in the studies of neuropathy. I do live in the US Dallas Tx. My family doctor used to work for the Mayo Clinic has offered to refer me. Do you get the treatments where you live or at the Mayo Clinic and how often? I took IVI G therapy as a little girl until I turned 18 and was off my parents insurance. The doctor passed away and my parents did not get my medical records. I have always had a low immune system. It can be given two ways IV or subcutaneously which way are you taking it?
IVIG therapy in IV immunoglobulin therapy. It is normally given once a month with IV predisone. It can reverse some of the neuropathy symptoms but not all. The IVIG therapy builds up your immunity. I took it as a child. There is a research study by Boston Hospital about two groups of people. One did IVIG and prednisone therapy the other medical marijuana. If you took anatomy and physiology in college nerves can not regenerate. In this study for over a year medical marijuana was proven to do some nerve regeneration and also helped with foot pain. It is an interesting research study.
Neurologist but truthfully I have struggled finding a good neurologist. I have been referred to the University of Heidelburg Germany there is a lot of information coming out of Germany and neuropathy. Google Dr. Anne Louise Outlander she is at the University of Boston research center. She is really interesting to listen to about neuropathy and the studies she has done. They are on YouTube where her lectures were recorded.
My Neurologist tole me that the IVIG wouldn't reverse the neuropathy, but rather slow its progression. My dx is Progressive Sensory Motor Axonal Neuropathy. I too wasn't too sure that it was working until my insurance refused to continue covering it for my condition. Almost immediately, my symptoms worsened. So, it did work for me. Unfortunately, clinical studies have not been done on my specific condition so I can no longer receive the infusions.
I have an immunologist that is considering it. My understanding is they use donated plasma or something through an IV infusion to help support a deficient immune system. He’s seeing me for asthma. Discovered abnormalities in my bloodwork.
These neurologists may be trying the most recent suggestions for treatment of PN.
I think the infusion is supposed to help with inflammation.
I’m still researching.
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Yes I too have had several rounds of IVIG infusions.
First round was few years ago and I felt no difference in my symptoms so I stopped them.
Last year I got a new neurologist, and he felt I should try IVIG again.
I did 7 - 8 mos at home by a home nurse and I felt no difference again, so my doc discontinued them.
Same with me, and I did many months of them.
I to had IVIG with no improvement of symptoms, so now my Neurologist wants to try me on Retuximab but my insurance company won’t approve it unless I do plasma exchange first, which I do not want to do.
It’s very complicated doing plasmaphoresis and I’m so,afraid of getting an infection in my central line in my chest,which is what they have to insert first.
There’s also no guarantee plasma exchange will work.
I’m trying to work with Medicare now to let me bypass the plasma exchange and just get the Rituximab.
Please explain what IVIG therapy is. Thank you
IVIG therapy in IV immunoglobulin therapy. It is normally given once a month with IV predisone. It can reverse some of the neuropathy symptoms but not all. The IVIG therapy builds up your immunity. I took it as a child. There is a research study by Boston Hospital about two groups of people. One did IVIG and prednisone therapy the other medical marijuana. If you took anatomy and physiology in college nerves can not regenerate. In this study for over a year medical marijuana was proven to do some nerve regeneration and also helped with foot pain. It is an interesting research study.
Thank you for explaining it!! What type of doctor is knowledgeable about this therapy? I'm grasping at straws!!!!
Neurologist but truthfully I have struggled finding a good neurologist. I have been referred to the University of Heidelburg Germany there is a lot of information coming out of Germany and neuropathy. Google Dr. Anne Louise Outlander she is at the University of Boston research center. She is really interesting to listen to about neuropathy and the studies she has done. They are on YouTube where her lectures were recorded.
I learned to ask if a neurologist specializes in neuropathy. Some specializes in seizures and others in Parkinson’s.
My Neurologist tole me that the IVIG wouldn't reverse the neuropathy, but rather slow its progression. My dx is Progressive Sensory Motor Axonal Neuropathy. I too wasn't too sure that it was working until my insurance refused to continue covering it for my condition. Almost immediately, my symptoms worsened. So, it did work for me. Unfortunately, clinical studies have not been done on my specific condition so I can no longer receive the infusions.
I have an immunologist that is considering it. My understanding is they use donated plasma or something through an IV infusion to help support a deficient immune system. He’s seeing me for asthma. Discovered abnormalities in my bloodwork.
These neurologists may be trying the most recent suggestions for treatment of PN.
I think the infusion is supposed to help with inflammation.
I’m still researching.