Hello,
My mother has sjogrens with disautonomia and igg levels around 1,600. Her doctor recommends IVIG treatment or rituxan infusions. Why would she do the IVIG if her levels are already high? Trying to understand everything so we can make a decision.
Thank You
I am being put on OCTAGAM IVIG at a infusion rate of 35mL/hr for 1 day every 2 weeks.
I have autoimmune dysautonomia and small fiber neuropathy.
I am very nervous about this as my first time using it as I am doing it at a at home setting with a nurse. Where do I store all my meds at as I just received them in a package. What should I be aware of etc. any answers would be highly appreciated.
Low G and M, A is low normal at 85. Strong responses to Pneumo 23 vaccine at six weeks and six months and strong antibody response to measles blood test. No frequent or long lasting infections. No autoimmune disease as far as is known. The side effects are very scary according to my research and what I see on here. Looking for opinions on which way I should go. Both doctors are Board Certified in Immunology and allergies.
Hello everyone
I have a difficult case of immune mediated neuropathy that affects the spine and dorsal root ganglions.
I had my First round of IVIg a week ago, 125g in 5 days.
I had an response in autonomic symptoms that now are oscilating, and some response in turbulence at the spine that also is UP and down now, hence a week into.
How long It took for you guys and girls to respond?
Thanks in advance
i’ve been doing scig Hyqvia for about 6 months now after failing ivig because of awful side effects. scig has been so much easier on me and made such a difference in my infections.
problem is, i don’t have much body fat to infuse into. i was taught to use my outer thighs or my stomach. i tried my stomach one time, never again. there’s not much fat to grab onto there and it felt like every move i made would stab my abs and made me sooo uncomfortable.
so, every month, i’ve been alternating between my thighs. this has also been challenging because my legs are pretty jacked lol. when i sit down, i can find a tiny bit fat to grab and infuse into, but as soon as i get up or move the wrong way, i’m in pain from everything pushing into my quad muscles. therefore, it’s rough to walk on the infused leg for a couple days afterwards. also in my left leg only it feels like there’s still a couple sacks of fluid left over many months after infusing into each of these spots. i use a heating pad after every infusion to help disperse the plasma but it seems like that’s not even helping.
hoping someone else has dealt with this and may have some advice on how to infuse more comfortably and successfully , or if anyone has experienced the residual lumps long after infusing into that spot ?
Hi! I get 1x monthly IVIG for primary immunodeficiency (SAD), I’ve been on it for a little over a year. Overall my health has really improved, but after a nasty bug a few months ago I’m getting “breakthrough” sinus infections right before my infusions.
We’re raising my dose from 30g to 40g. I know it will help but I’m nervous about increased side effects.. I already hydrate like crazy, take premeds and get IV fluids but I usually have a 2-3 day recovery with flu-like symptoms. Has anyone here had a dose increase before? How were the side effects? Does anyone take a lumbar pillow for those dang infusion center chairs? Dreading a longer infusion time lol. Thanks in advance :)
Please educate me on SCIG
I know very near nothing.
I need to know about frequency and dosing.
My prescriber has never wrote a script for SCIG before and is also researching. I would like some real world advice, specific to me. . The original plan was to get IVIG the first time. Privigen 35 gm. The script was written for once a month, starting in February Finally got it May 5, 2026
And then start SCIG.
I have had IVIG once. May 5, 2026
They're trying to get preauthorization
For Hizentra 10 mg/50 ml.
Aetna said this was all the information they had about the script.
Please educate me on the Hizentra and how it should be given.
I was told early on the the Hizentra would be given at a lower dose weekly or every other week.
Thank you.
I've been sick since May 1st
I'm do for bloodwork before or on June 3
Last tested April 30. 2026. My IgG was 183
I need help on the dose regimen my prescriber has never prescribed it before.
She's trying to learn about it the same as I.
My diagnosis is high risk Multiple Myeloma.
I had Carvykti CarT December 31. 2025.
My IgG has been low just about constantly since 2021. By low, I mean in the 400s.
April 28 or close, my IgG was 183
What exact information can I supply that will help me get the information that I need to know?
Is there a Dr. Anywhere close to Clifton, Illinois 60927-7032 that I could see and get 2nd opinion on dosing?
Anywhere within 6 to 8 hours drive?
I know nothing about this and need some good direction. Thanks
I started Privigen last month. Right away, I had tingling around my nose. They added Benadryl and a steroid and the reaction didn’t get any worse.
For my next round, my doctor switched to Octagam. We did the premeds and I still had the tingling. It felt mild to me, but the nurse was really freaked out. I think she made it seem a lot worse than it was and my doctor ended up telling them to stop after only a half hour. Later that night I started getting tingling in my fingers, and now my doctor is hesitant to move forward.
After the headaches passed after my first round, I had the best two weeks in like four years. My diagnoses are undifferentiated connective tissue disease and Behcets. I’ve tried so many different drugs and this is the first one that felt like it could actually work. Is the tingling really that big of an issue?