Hello! I just went back to the neuro last Friday and he has suggested I go on the immune globulin (IVIg) treatments every month. I've done research but would like to hear from those that have done this/had success/no success. Thank you!

Hi,
I do receive IVIG and have had some success with it. I get one RX a month. It stays with me for about 10 days. I wish it lasted longer. They tried to increase the number of treatments per month but I got too sick from them.
I hope this helps.

Thanks for the reply!! I do hope it does well with me too.

Hi Hopeful
Its good to hear that you are having some success with IVIG. Can I ask you what kind of Neuropathy you are be treated for? I was diag with SFN around 2 yrs ago. by skin biopsy. My Neurologist does not think I am a "candidate' for IVIG these treatments.
My SFN is widespread meaning I feel it in my legs, feet, arms , hands, Torso and face and mouth. Ive had a million blood tests, MRIS, you name it. They are calling it Idiopathic for now. My symptoms are pins and needles, a buzzing sensation that starts in my head and goes down thru my body and I feel burning patches on my skin as it travels down into my feet, leaving me with burning feet. Ive developed tinnitus , I never had it before. I'm almost embarrassed to write this because I know it sounds crazy. Its difficult for me to tell any of my family members what I am going through because of the way it sounds. I appear normal and healthy to everybody else, except for the suffering in my eyes. I take 325 mgs Lyrica, not helping much. My question is
does this sound like anything you suffer with. Should I be more persistent for the IVIG. Do you think it could help with my kind of symptoms? I am at my wits end. Dont know what to do or think anymore. This buzzing, tingling and burning for no apparent reason (Idiopathic) is driving me crazy and depressed. Maybe I will make this a new post so other people can read it and offer some advice or help.Thank you for any advice..
Marie

Hi Marie,
Actually, your symptoms sound exactly like mine. I also had a skin biopsy and was dx'd with SFN. My symptoms work from my feet to my head. The only place spared was the left side of my face. It started in 2008 in my feet. Within the next few weeks it had moved everywhere. I also have tinnitus but it isn't too bad. Some medications can cause it. As you have, I had every test possible and the answer was idiopathic. Both of my doctors say it is Sjogrens.

My neurologist did believe that the IVIG would work for SFN but could not get the insurance to agree to it. My rheumo put it into insurance under Sjogren's Syndrome and they finally agreed to pay. He put Sjogrens, SFN and Fibromyalgia. Lucky me!!

Currently, I get 20mg of Solumedrol with it. They started that to increase the results from IVIG and after they tried to increase the dose and I got really sick.

Please don't ever be embarrassed to post anything here. We are all going through so much and need one another's support. I know how hard it is to help people to understand our illness because we look fine. I am on a medical leave from work and had to go in one day. One of my co-workers told me maybe I shouldn't come in looking so good because people will not believe me. I was not quick enough on my answer and just told her you can see pain.

At your next appt. speak with your doctor about IVIG. Do your research and be ready with your reasons you think it will work.

I hope this helps. hopeful

I have the pins/needles feeling in the bottom of my feet every morning I wake. Also, it will randomly creep up in my body and skin in all parts. Even......private parts. (Maybe tmi but it is so true!) When that happened, i thought i had lost it!

I just started IVIg therapy for my autoimmune small fiber neuropathy with autonomic symptoms. I started 3 weeks ago and had 5 infusions over 5 days.
I go back next week for round two of 5 X 5. 1 month later, same thing, 5 X 5.
I am hopeful that this loading phase will really knock this stuff out of me for a while, at least that is what the Neuro thinks and I think it is possible as well.
So far I have alot more energy than I had before and hope to get back in the gym if my body will quit fighting me back.
The first couple of days went well, infusions were given at normal titration without issue. Had slight headache on 4th and 5th day, but pre meds made it go away. On Saturday, the day after the last infusion I had a nasty headache that lasted about 20 hours, then poof, went away.
The main thing is to not fall asleep during the transfusions so you can keep drinking water. You should be getting up to go pee about every 30 minutes.
Hydrate a day before, during, day of, after, day after. I cant stress this enough!
Hope this helps,
N1

Thanks so much i wont forget!

You did not lose it. It happens to me to. My doctors gave me a cream for it. It is a combination amitriptyline and Baclofen. I had to special order it. You might to speak with your doctor about it.

Nervous I'm happy for you that you were able to handle the dosing. I seem to not be able to take more than 1 day at a time.

You can't be more right about the hydration. Even with that I couldn't tolerate more than one day of RX. Maybe I'll try again at some time.