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Anyone had success with IVIG infusions for idiopathic neuropathy ?
@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.
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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!
Thank you for your response, @katec I don't know what to expect from the infusions. I already take Meloxicam and Claritin in the morning, but I may take acetaminophen afterward, too. I don't have any information about the medication, but I'm only scheduled to do it on either Tuesday and Thursday or Wednesday and Friday every 4 weeks. So, I hope I won't find it as intense as your son did. I'll post here about how it goes.
@katec. Please keep us posted on your son. I heard there's a very good neurologist at UT Southwestern in Dallas by the name of Jaya R. Trivedi who specializes in ambulatory neurology.
People seem to react differently to Ivig. I do three days every 4 weeks. I finished my 2nd round yesterday. I experienced no side effects at all during/after days 1 & 2. Toward the end of day 3 and throughout day 4 (today) I get a mild headache and some stomach discomfort. Yogurt, Ginger Ale and Mylanta work well. The headache will probably disappear today. The stomach issue may last a few more days. The side effects have decreased this time
I had my first infusion today and had a barely noticeable headache in the evening. #2 is tomorrow, then 2 more in 4 weeks.
I was supposed to start yesterday, but when I arrived at the cancer center where infusions are done, they wouldn't let my service dog go in, which is a clear violation of the ADA regulations. So, Sadie had to stay home, a very rare occurrence, and I was able to get in today instead of yesterday.
My hope is that the IVig will reduce the pain in my feet and ankles, and slow down the progression of neuropathy. Time will tell.
Jim – been at this for five years, two consecutive days per month. Our infusion center recommends a Benadryl an hour before. My neurologist prescribed Prednisone for the migraine headache that follow infusion. I stopped the prednisone after six months or so, kept up the Benadryl. Tylenol works now for occasional headache.
Neurologist started me on IVIG for pain (was at 9.5) and 'hope' that it would slow the progression of the neuropathy. Started in right leg ten years ago (although symptoms noted 50 years ago), is in all three limbs, but right leg is worse, followed by right arm.
@jimhd I'm hoping that for you too. Thanks for the update.
@ericd47 So, if you were at 9.5, what's your average pain level now, and how long did it take to start affecting your pain?
What are the infusions for? Neuropathy?
Yup. Specifically "CIDP". Blood tests indicate the cause is an "autoimmune" condition, for which, infusions of "Gamunex-C" are administered. The hope is to get my immune system to stop attacking the myelin sheath that insulates my peripheral nerves. If successful, my symptoms will get no worse. There is, however no way, to my knowledge, to reverse the damage that has been done.
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