I have daily Hizentra immunoglobulin infusions (SCIG) for a primary immune disease, and I still have horrible nerve pain. I guess the question would be, could it be worse if I were not infusing?
Hi @katrina123 ,
It took along time for my infusions, to what I would describe as "working" still iffy. However; my PN is not worse, it has improved about 10%, but do I contribute part of that improvement to all the other things I do for my PN? As mentioned my IVig is for something else, and for that it is working, and there are not words to describe my joy with regards to that.
Have you considered doing your own home infusions (SCIG)? If you infuse more often at a slower rate with a smaller amount of immunoglobulin it can take less time. I slowly infuse 1 gram of Hizentra daily and it takes around 15 to 20 minutes. This has eliminated the chest pain, nausea, severe headache, and joint pain that I had when I infused once a week.
A nurse can come to your home and train you on how to do subcutaneous infusions.
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.
I also have had many rounds of IVIG infusions, and they didn’t help me at all.
I felt no improvement in my symptoms, so now looking for another option,but my Neuro suggested Rituximab, but Medicare won’t approve it until I do plasma exhange.
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.
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
Hello, I have idiopathic small fiber neuropathy and am on IVIG for several months now. It seems to help me reducing burning pain a bit. The side effects that I have experienced so far is fatigue for several days after IVIG. I don't like needles and it takes several hours for the infusion. Also, several doses need to be given until improvement is seen, if the treatments work.
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
Hello @cyp238ress. I noticed your interest in IVIG so you will see that I have moved your post to join others already discussing this topic. You can find your post here now:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @harley22@katrina123 and @jfn have all recently commented and @kle has also responded to your post.
Why do you suspect a genetic component and if your suspicions are correct, does your neurologist think IVIG will be successful?
Hello @cyp238ress. I noticed your interest in IVIG so you will see that I have moved your post to join others already discussing this topic. You can find your post here now:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @harley22@katrina123 and @jfn have all recently commented and @kle has also responded to your post.
Why do you suspect a genetic component and if your suspicions are correct, does your neurologist think IVIG will be successful?
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I have daily Hizentra immunoglobulin infusions (SCIG) for a primary immune disease, and I still have horrible nerve pain. I guess the question would be, could it be worse if I were not infusing?
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2 ReactionsHi @katrina123 ,
It took along time for my infusions, to what I would describe as "working" still iffy. However; my PN is not worse, it has improved about 10%, but do I contribute part of that improvement to all the other things I do for my PN? As mentioned my IVig is for something else, and for that it is working, and there are not words to describe my joy with regards to that.
jfn,
I am glad that you are feeling better.
Have you considered doing your own home infusions (SCIG)? If you infuse more often at a slower rate with a smaller amount of immunoglobulin it can take less time. I slowly infuse 1 gram of Hizentra daily and it takes around 15 to 20 minutes. This has eliminated the chest pain, nausea, severe headache, and joint pain that I had when I infused once a week.
A nurse can come to your home and train you on how to do subcutaneous infusions.
I also have had many rounds of IVIG infusions, and they didn’t help me at all.
I felt no improvement in my symptoms, so now looking for another option,but my Neuro suggested Rituximab, but Medicare won’t approve it until I do plasma exhange.
Didn’t work for me either.
Already did it with no improvement in my symptoms.
My doctor has prescribed IVIG for my neuropathy. I'm hesitant to try it due to the side effects. She is not sure it will help, since I don't have positive autoimmune markers. She said this is the last thing she has available to try. My neuropathy remains idiopathic but I now suspect has a genetic component. Have others tried IVIG, and what was your experience with benefits and side effects?
Hello, I have idiopathic small fiber neuropathy and am on IVIG for several months now. It seems to help me reducing burning pain a bit. The side effects that I have experienced so far is fatigue for several days after IVIG. I don't like needles and it takes several hours for the infusion. Also, several doses need to be given until improvement is seen, if the treatments work.
Hello @cyp238ress. I noticed your interest in IVIG so you will see that I have moved your post to join others already discussing this topic. You can find your post here now:
- Has anyone had IVIG Infusions for Neuropathy?: https://connect.mayoclinic.org/discussion/ivig-infusions/
Members such as @harley22 @katrina123 and @jfn have all recently commented and @kle has also responded to your post.
Why do you suspect a genetic component and if your suspicions are correct, does your neurologist think IVIG will be successful?
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Hug
3 ReactionsAlready been through several rounds of IVIG with no improvement in my symptoms.
As a result it was discontinued.