However! Myself got Guillian barré syndrome since 2015 IVIG is the go too! Had four Cycles and has never worked,plus it’s only temporary fix I believe 3/6 months of relief. Too add some people can not tolerate IVIG..Horrendous migraines nausea. Personally this me ,works for others . 2023 still GBS MMNCB 🏴
@lucidmed3343 Жыл бұрын
Hi Kevinbaxter7390! Absolutely correct! There is no "one size fits all" response with IVIG. On the flip side of your experience are the patient's it has worked for and is the difference between living a normal life and being completely bedridden. Migraine and nausea can occur but I'd also want to know how large your dose was and how many days it was divided over as well as your top infusion rate. These factors can have a significant impact on side effects with Ig. D
@angeminc Жыл бұрын
I have chronic nerve pain and scalp dysesthesia after covid booster. Ive been sick since Dec 2021. Woykd IVIG helo nerve pain and scslp dysesthesia.
@lucidmed3343 Жыл бұрын
Hi angeminc! I'm sorry to hear that and I don't doubt it. Did your docs say what is causing the nerve pain? Do you have an official diagnosis? I ask because IVIG will only help in specific circumstances..CRPS, small fiber, Guillain barre, myasthenia gravis etc
@lovetitleist692 жыл бұрын
Hello @Lucid Med. Where is your clinic located? I start my first IvIg treatment at Mayo Clinic in Jacksonville this Monday (Dec 12)
@lucidmed33432 жыл бұрын
Hi! I'm located in NJ and that's great you've got a light at the end of the tunnel with the IVIG. You're in great hands at Mayo. Make sure you hydrate really well about 48 hours prior to infusing. This will help cut down on the headache. If you have any questions or issues after your 1st cycle please let me know. I check comments several times a day. You can also email me directly at minettid2@gmail.com. Danielle
@HarmlessHobby2 жыл бұрын
OP. I'm on 400mg every 3 months for neuropathy. When will I feel better?
@lucidmed33432 жыл бұрын
Hi Taken, I'm sorry to hear you're battling neuropathy! So if I'm understanding you you're on 400 grams of IVIG every 3 months? What is the cause of your neuropathy may I ask? GBS? MG? How long have you been infusing? So many questions before I can get a good picture of what's possibly going on Danielle
@HarmlessHobby2 жыл бұрын
@@lucidmed3343 apparently autoimmune, my doctor thinks it could be early sjogrens but we arrived at this conclusion by elimination of other causes. I have lesions all over my trunk and a weakened immune system, but so far my most confident diagnosis is dysautonomia and me/cfs. I had an extremely high ANA and my cytokines are elevated. The skin biopsy was positive for SFN.
@lucidmed33432 жыл бұрын
@@HarmlessHobby All making sense now...the dysautonomia alone is an absolute bear. How long have you been infusing Ig all together? The issue with autoimmune is there are certain tests that do a great job of identifying certain chronic diseases but if you fall into the process of elimination group it can be frustrating. I'm assuming your Ig dosing is appropriate for your weight. Is it 1g/kg or 2? Ig can take a while to work...6 months to a year but typically within that period you'd know whether it's effective. The only thing that sometimes helps is to possibly increase your grams if you're doc is starting you out at a lower dose so there's room to jump up but then we also get into whether the prior auth will be approved. I might also suggest you discuss possibly increasing the frequency as you may be having a "wearing off" period too soon. Some of my patients do better breaking dosing up and infusing every month
@alexandriat5929 Жыл бұрын
The first dose and I am seeing my skin improve. I have SLE lupus, multiple autoimmune disorders. I am on 2 infusions a month with HQC and medrol.