Ivig
 

My new neurologist has suggested that I try Ivig. Is there anyone in this group that is my age with my same problem,that has tried Ivig. I am 59 years old, with Small Fiber Periferal Neuropathy of an idiopathic nature. Mine is Full body neuropathy. I'm miserable but I'm afraid to try Ivig. Can anyone share their experience with me? Thanks very much. Jan

Sorry, can't help
 

I am sorry I can't help, but I wanted to say thanks for posting since now I've googled and learned more about this.:wink: I am keeping it in my arsenal of things to try if my infusions don't work. If I ever try it, I will post about it. If you try it, please post your experience about it! And of course, I hope it works for you!

I hope others who have tried it will post their experiences.

I was hesitant at first to reply, because I, personally, don't have anything wonderful to report about the success of IVIG for SFN. But I chose to reply anyway with hopes you realize and keep in mind that everyone is different and we may have different causes to our neuropathy and therefore different goals and responses.

I started using IVIG for my immune deficiency from 1996 to 2006. Then restarted in 2013, again for my immune deficiency. But in early 2104, my neurologist increased the dose significantly to use IVIG to slow progression of my long standing PN/SFN/AN. My neuropathy is from Sjogren's (autoimmune disease) and it has attacked and damaged the dorsal root ganglia (confirmed by special MRI/MRN). This type of damage is not typically reversible, and the reason we never tried before to use the higher doses of IVIG required to treat neuropathy. But there is some data that shows IVIG can help to slow the progression of the damage and in some cases help certain aspects of PN.

I don't have huge problems with burning like many here with SFN. My neuropathy causes me sensory loss and PAIN...considerable pain (but not full body). But the most severe aspect of my neuropathy is autonomic dysfunction. So my goals for IVIG are likely far different from yours. We are trying to simply slow/halt progression of this autonomic process, not reverse the damage that is already there. We also hope to improve some aspects of PN, like proprioception, which is the cause of my many falls...and to keep my pain from getting worse. Therefore, my IVIG results are not so easy to 'see'...we are just hoping to 'not see' any more progression. So, I don't get relief from the pain like you would expect, because that damage cannot be fixed for me. I will say that I see improvement in the allodynia (hypersensitivity of surface nerves) since using the IVIG for PN.

Your SFN is more inline with the types KNOWN to be helped by IVIG. So I hope you will have good results. Keep in mind that it is a 'big gun' treatment that carries a lot of risks. One of the reasons I listed the start dates of my IVIG treatment is so you can see YEARS of treatment, then a big gap. That big gap is from a severe reaction to IVIG in 2006. Yes, even after years of using this, it's is possible to have severe reactions with any dose. I got a severe case of aseptic meningitis...with white cells in spinal fluid over 700 (normal is under 10). I was in the hospital for a week and it took another month to recover. I don't tell you this to scare you...just to inform you of the risks.

Follow all the tips they give you...like hydration before the infusion (very important), take your pre-meds, and report any problems during the infusion immediately (don't try to tough it out if you start to get a headache or other symptoms).

Hope this is helpful.

Thank you En bloc for your very detailed response. Can you answer another question. There are so many things I do not understand about IVIG. In your opinion, do you feel you improved significantly with IVIG. I'm really scared to start IVIG because the medications I'm taking somewhat help me. My SFPN is very severe, Full Body and this all happened within 3 years...since it's so severe is IVIG even worth a try, can it make this severe nerve damage any better? Will I have to be on it the rest of my life? Side affects scare me to death. And my biggest question, will I know right away wether IVIG is going to work for me after the first treatment? Thanks for being so patient to answer my questions. Jan

Due to the nature of my neuropathy and damage at the dorsal root, I do not think the IVIG has helped in reducing the overall nerve pain. Sorry to say.

However, since being at the higher dose of IVIG for neuropathy treatment, I can see that my autonomic dysfunction has not gotten any worse and even seems to have stabilized in some ways. I also haven't had a fall in almost 5 months, so I think my proprioception may be improving.

The allodynia hypersensation type pain on my legs has definitely improved and that is a SFN symptom...one you my have with your SFN.

Some people get a pretty immediate response to certain symptoms with IVIG. For others it can take a while before noticeable fiber density is increased and pain/burning relief achieved. I think you will know in the first 1-3 infusions whether it will help you.

I would say it is ABSOLUTELY worth a try.

I honestly don't know if you would have to be on it for the rest of your life. In my case, yes, but you are dealing with a different situation, different Dx, and different pain.

IVIg
 

Dear liftyourhands,
IVIg, also gave me aseptic meningitis 2x. The first time right after the first dose was administered, I was scheduled two have two doses. The 2nd time, they used a different brand, scheduled 5 doses in 5 days, giving 20%, each day. On the 3rd day again I got aseptic meningitis.

I now take hizentra, I infuse at home. It is given subcontinuasly, into the fat of my body. I have MMN, multyfocal motor neuropathy. I was diacnosed when I was 66 years old, I'm 70 now. MMN, also is an autoimmune disorder.

Sincerely,
Maria

I used IVIG in various doses and intervals for nearly 4 years. I never had any major side effects or complications. In the beginning I got a headache after the infusions. I thought it was from infusing too fast, but after a few infusions I discovered it was actually from the benedryl they were premedicating me with. Once I stopped the benedryl I had no side effects at all.
My main concern with the neuropathy is weakness. I did not leave the infusion room immediately stronger like I was told some do. The main reason I was on the IVIG is because it was believed that an abnormal antibody in my immune system was causing the PN .
Just remember the IVIG itself does not "heal" the nerves. It might help with what is causing the PN,, so that the nerves can then begin to heal. ( :( which we know is a sloooow process ) the IVIG did give me an energy burst for the first few weeks after my infusion, which was always nice :)
good luck in your decision---everybody's experience with it is different. I would not hesitate to go back on IVIG if my neuropathy began to progress.

Do you need a low IGG for it to work?

I'm not sure I understand your question. The low IgG is a primary immunodeficiency disease...a completely different medical condition from the neuropathy. I just happen to have both conditions and receive the IVIG for both. It replaces the IgG my body is unable to make on it's.

The dosing of IVIG for neuropathy is completely different and usually about 3 times more then required for an immune deficiency.

So basically, if I understand your question, NO, the low IgG has nothing to do with the neuropathy and therefore not required to have a low IgG for it to work. The IVIG helps the low IgG (of an immune deficiency) by bringing the level up. The IVIG for neuropathy works as an immune modulator to help organize better immune function in autoimmune types of neuropathy. But the actual mechanics of how the IVIG helps neuropathy isn't completely understood yet...they just know it helps.

Hope this helps.

Ok gotcha. I just assumed IVIG was just a big dose of IGG but apparently it has other modulating mechanisms. I have normal levels of IGG but it wouldn't hurt try it I guess. Maybe I will take some colostrum in the meantime haha

IVIG is a big dose of IgG. Yet, when introducing it to the immune system with autoimmune activity it's seems to help modulate it and help it to function better. They really don't know why it works so well. This actually isn't uncommon for a medicine to work and they not know why. The use of Neurontin and other anti-seizure meds for neuropathic pain began as an accident of sorts. They just noticed that seizure patients receiving it start to have less pain. So they start using it for PN. They now know more about how it works but they didn't at the start.

If I ever get IVIG i sure hope it works. No other options really. And I got scared of prednisone after seeing a bunch of youtube vids about it. No thank you! My first neuro prescribed me 60mg daily! After doing my research I tossed the prescription out.

My IGG and IGM were both very high, and I was on IVIG. The IVIG was used to modulate the immune system in my case.

Good to know. My levels are on the higher end as well. How much did you improve?

With IVIG, plasmapherisis and rituxin it is believed the immune attack on my nerves was stopped.
I'm not 100% sure which one stopped it, or if it may have been the combination of them all. I did not "get better" or regain any lost nerves. I just stopped progressing, with the nerve damage staying in my lower legs/feet.

Hi Northerngal, can I ask how you know that the attack had officially stopped? was it judged solely by the fact you felt it wasn't progressing?

I did not feel like I was progressing and the emg/ncv tests had stayed the same.
I'm still afraid that it one day might progress, but try not to worry or think about it unless it starts happening.

Seems IVIG is tough to get approved by insurance. How do people get approval for PN if its not CIDP or MMN? Those seem to be on the "approval" list for most insurance companies. Is there a workaround?

If you have a positive skin biopsy for SFN then getting authorization for IVIG is easier. Without it, it's very hard...unless you have other confirmed Dx.

I believe you would have to have some sort of diagnosis that involves the immune system. Even then, only certain ones are approved for IVIG. If your neuropathy is not caused by some sort of immune system malfunction then most likely the IVIG wouldn't make a difference.
When unsure some doctors like to try 3-4 rounds to see if it makes a difference. But to do this they need to give you a diagnosis that your insurance will cover.
If it's questionable that your neuropathy immune related then ask your Dr. Dx you with CIDP to get it covered.

Not sure if my doc would do that, but in addition to that, I think the insurance would want to see EMG's and other lab results to prove it. I have UHC.

Yep, you are correct!! Due to cost, most insurance Co's want proof...labs AND test results (skin biopsy EMG/NCS, etc).

I'm actually laying on my sofa after having IVIG the last two days. I've been getting them for about a year and a half. I wasn't sure if they were working and I stopped for a few months last summer. I went into a flare after a while. It appears to be working for me.

The treatment is a little hard for me. It feels like a war is going on in my body for a few days but then I start to feel better. My neurologist had a hard time getting it approved so my rheumo tried and got it approved.

How my doctor explained it was the IVIG fights my own antibodies to get them off my nerve endings for a while. It's is suppose to slow down or halt the progress of nerve damage.