Has anyone had IVIG Infusions for Neuropathy?

<p>I was receiving Gamunex and had few side effects. There is currently a shortage of Gamunex nation wide. The doctor had to switch me to Gammagard. Since taking Gammagard my vision has changed. It is very difficult for me to read. Seem to be using aids. Has anyone experienced a similar issue. I have read the common side effects. Doesn't mention vision changes. Thank you in advance for you help.</p>

Hi, @alexis - I'd be concerned, too, if my vision changed after switching from one medication to another. Hoping that others like @harley22 @arcticmark @johnbishop @sparshall @arnrob may have some thoughts on suffering some vision changes making it difficult to read after receiving Gammagard liquid [Immune Globulin Infusion (Human)] 10% instead of your previous brand of Gamunex.

How is your reading now, a few days later? Have you had the chance to speak to your prescribing doctor about the vision side effects?

Hi, I've had small fiber neuropathy for the past 2-3 years, and was diagnosed by skin biopsy last November. Some bloodwork came back and it shows I have auto-antibodies targeting TS-HDS. My doctor is going to start me on steroids via weekly IV treatment. He mentioned at this visit a little about IVIg treatment but didn't dive in too much because of the price. I was just curious as to if anyone who has had steroids via IV and/or IVIg treatment how the experience was (worth it, pain level post, etc.).

I can only give you my personal experience with IVIG. There was no pain involved at all. They just put the little itty bitty needle in and I sat there and watched television and they also provided me with a free lunch. The only problem that I had was that my blood pressure shot up. So to remedy that, they lessened the drip to a much slower pace. And that's all the problem. If you have any other questions, I'd be more than happy to answer them for you. Also, there was a registered nurse with me the entire time . Let me know how it works out for you. Rose

Hello @smit2720, I would like to add my welcome to Connect along with @geegie and other members. You will notice that we moved your post into an existing discussion - IVIG Infusions so that you can meet other members discussing IVIG treatments for neuropathy.

@sparshall @harley22 @arcticmark @jimhd and others may also be able to share their experience with IVIG treatments.

Did you have a specific diagnosis or cause for the small fiber neuropathy or is yours classified as idiopathic like mine?

It's idiopathic. And thank you for moving me this discussion! Very helpful!

Sounds great however if I would need to have it for the rest of my life that would be impossible. My insurance would never cover it for my condition. If I could take a few doses and go into remission that would be great but it doesn't seem to work that way.

@sparshall @rwinney and others.

My neurologist did the work of Medicare approval within a few weeks, and I'm scheduled for the first infusion next Wednesday. He's hoping that it will give me some relief from the burning pain in my feet and ankles, as well as slowing down the progress of sfpn.

@katec I'm wondering how your son is doing. Did he do the Ivig infusions? I'm curious, too, if you found a car for him. I probably wouldn't be asking these things if I had been active in Connect, but life happens. Still praying for your son every day.

The scheduler has set me up with Wednesday and Friday infusions once a month. I'm curious to see if they have any effect on my pain. MSContin is the only medication that's helped long term, and I've tried many, many medications, both neuropathy specific meds, and a long list of off label meds. I'm going to see a new pain specialist in October, who is certified to prescribe a couple of medications I've not yet tried. If the infusions don't give me pain relief, and if one of the new meds does work, the next step may be having a pain pump implant using the medication that works best.

Thank you all for writing about your experience with IVig. It's been helpful to read through the whole discussion. I'd appreciate it if any of you have an update you would be willing to share.

Jim

It's so nice to hear from you, Jim. Good luck with trying IVig infusions. I recall learning about the difficulties of getting approval. Good for you..

I'm happy to read you are still persevering. Keep at it.

Hi Jim! I’m so excited for you to start your infusions!! I hope that they bring you relief!!

My son tried IVIg last summer. Dr Oaklander prescribed Gammagard for 4 consecutive days and then have 3 weeks off and then do it again. He did this for 3 months. The nurse that came to our home to administer the infusion said she had never seen this dose before and it was pretty intense. Each infusion lasted about 3 hours. I’m not going to sugarcoat it, he had a tough time with them. They gave him a horrible migraine (to the point of vomiting) and he just felt “yucky” for a couple of days afterwards. But we noticed if we gave him Benadryl and Advil the morning of and then continued that every 4-6 hours, he was able to handle the migraines a bit better. They also started giving him a bag of fluids via IV both before and after the infusion and that seemed to help as well.

All this, and unfortunately he did not get any pain relief from the treatment. Dr Oaklander let him decide if he wanted to continue on or stop the infusions after 3 months. She wasn’t too optimistic about seeing any positive changes but willing to give it some more time, but she let him decide since and he said no more. I wished he went another couple of months or they had played with how often he got it so it wasn’t quite so hard on him. Maybe something to think about in the future.

I’m hoping that your dose is a bit more spread out and not quite as intense as his, so you have little to no side effects!! I wished he had an in person doctor overseeing his infusion rather than her 1,000 miles away just getting a report from the nurse. It could’ve been handled better.

He is driving now, but just a regular car. He’s adamant about not needing any modifications yet and hates being different than his peers, so he’ll continue to put it off for as long as possible. He’ll go to college next year, so I’ll be curious how he handles how much walking is involved on a college campus. He just wants to be normal. We don’t have a great neurologist in town here (Austin, TX) since he’s still considered pediatric (17 years old) the adult neurologist still won’t touch him until his actual birthday in May. He’s seeing a pain specialist, but he’s running out of ideas.

Please let me know if you have any more questions about IVIg! I’m happy to share any of his experience especially if it helps someone else!!
Best of luck to you!

Kate