r/IVIG

Hi! So curious for those who have Ivig for small fiber neuropathy - how long did it take for your burning to go away if it ever did? I’ve been on it for 8 months and I’ve noticed an improvement but I still burn :/ I am on so many pain medications and then I see ppl say they got off all their meds.. for reference I have Sfn on every inch of my body. It’s hell on earth :/

Hi! I’ve been on IVIG 40mg 1x four weeks for about 18 months. I’m 42 and have PI so it will be a lifelong treatment. I tried SCIG for a few months and really didn’t like it for lots of reasons, I’m happy with IVIG.

BUT my veins are trash so IVIG and bloodwork always take multiple sticks. I go to an infusion center with great nurses, but we’ve only been able to use the tops of my hands. They’ve told me part of the problem is scar tissue building up on the few veins we’re using.

My needle anxiety is getting bad, so I asked for a referral to get a port (central line) this week. Can you tell me about your experience if you have one? Good and bad and everything. I’m nervous but hopeful for some relief!

Hi everyone, good evenning.

These conditions are hard, i saw a post a few days ago about another dude having similar, i feel like im having a flare or more lascinating pain post infusion, I have another infusion day tomorrow

There was a few replies which are easening, that people can relate,

Still when researching about that, Its anedoctal, not something clinically validated, but still counts.

Anyone else feling more pain prior from things getting better, can more people relate to this?

Thanks everyone.

See above. I responded to steroids seemingly at first but then they seemed to stop working. Do I still have hope that anything else would work to actually repair the nerves? We think it’s autoimmune mainly due to onset after a flulike virus, autoimmune hair loss,relapse remitting, young female and ruling everything else out.

My adult son had his first Ivig for Hypogammaglobulinemia last week. Did cmp yesterday at Drs.

Both are high like 100 and 130.

Dr said we have to wait to see if they go down before Ivig again.

Does this happen to others?

We are using Gammagard. 2kg/...

And advice?

Hi everyone,

Im Brazilian, .

I'm currently on my second IVIg cycle for autoimmune painfull neuropathy. It's difficult to judge the effect of my first cycle because I had a flare while tapering prednisone, so I'm almost looking at this cycle as my first real opportunity to evaluate better , aside im still early in the treatment.

I've noticed a shift in my pain pattern, with more sharp, stabbing or electric pains. I was wondering if anyone who has been on IVIg for a longer time experienced similar.

For those who are longer on It due to neuropathies.

Did someone noticed a change in the pain pattern of your pain before improving?

I mean as If It was a shift towrads more eletric instead of a more turbulet pain, also having some shooting pains which are a bit diffrent from the pain that Its usually felt troughout the nerves, in diffrent spots, anyone relate to that ?

How long did it take before you folks started noticing therapeutic benefits or improvement ?

Thanks in advance.

I just had my first infusion of IVIG on Thursday (for neurological issues- came on suddenly like GBS but lasting long enough to believe it is CIDP, but now Dr. is seconding guessing the diagnosis after a clear EMG/NCS). I had to keep slowing down the infusion rate due to chest pain and generally not feeling great, but did not have any significant problems.

Monday afternoon my voice was suddenly raspy. I left work and by the time I got to a grocery store 5 minutes away my throat was burning, itchy and weird feeling, and felt tight. I got light headed, my heart rate spiked up and I ended up calling EMS thinking I was having an allergic reaction. I somehow didn't pass out, but they said my blood pressure was so low it was not registering on the machine. I somehow didn't pass out, and ended up waiting in the hospital ER for 9 hours before even being seen. They said my throat looked clear (hadn't actually closed up). Didn't know why everything was still burning/itching/etc. and sent me home. Saw the neurologist yesterday and she didn't think it was related and said allergic reactions usually come on during/right after the infusion.

It has been 2 days now and it is still the same- neck/chest is burning (skin), inside my throat is burning and still feels weird/swollen/etc. Sometimes my lips/tongue feel funny. I took Claritin after leaving the hospital and again today. It does not really seem to be doing much. (I can't take Benadryl).

I have no symptoms of any kind of illness- just this weird stuff. I rarely get allergies, and when I do it is usually itchy/watery eyes and runny nose. I've never experienced anything like this.

Has anyone experienced this after IVIG? If so, what did you do? Nothing else makes sense.

Hello everyone-

I had no choice but to be late with my subcutaneous Hizentra. I believe my pharmacist said you can be a couple days early OR a couple days late from your usual day. Two days shouldn’t hurt as long as it’s not done continuously. Does that sound correct? Thanks all.

I had my first round of IVIG on Tuesday. I didn't have any side effects. As a matter fact, I felt great afterwards. Then the second infusion was completed 2 hours earlier than my first infusion. I didn't think anything of it..Later that night I experienced the most painful headache in my entire life. My husband had to rush me to the hospital. They gave me some concoction to ease the headache. I took the pre meds before both infusions. Please give me any advice to help. My rheumatologist did update my orders for a slower rate.

Hi there, could you please tell me if you all got side effects when getting the first shot? What would be a sign to stop, what to go on? An could you please tell me what kind of side effect did you get and WHEN YOU STARTED to feel better if you feel better.

I want to rule out what % of you is feeling improvement and what % of you not.

Thanks

I’ve been getting IVIG for a year now. I recently changed doctors and they increased my dosage from 30 to 60G every 3 weeks. I was so stressed out that the side effects would be even worse as I’ve been beyond miserable after every infusion with such horrible side effects. My first 3 infusions at 60G were horrible. I was actually waking middle of the night on night 1 with the worst headache ever. I just chalked up the horrible headaches to residual brain inflammation from having meningitis encephalitis last year.

My infusion nurse has been amazing and she has been behind the scenes tweaking different things and I finally had my first infusion without side effects for 3-5 days!!!!! I only got sick towards the end of my infusion and the rest of the evening after but woke up feeling fantastic the next day!

I just wanted to share for those that are in my “before” shoes that there can be an “after” that’s different.

I have SCIG Hizentra I won't use, is it possible to donate it? I'd prefer IVIG but I can't get that.

New to immunology. 57 y/o male with a history of multiple complicated diverticulitis flares, sepsis, sigmoidectomy, and severe persistent asthma. Doc wanted to explore reasons for frequent infections. Found out this week from labs that my IgG <75. My IgA and IgM are normal. Had labs in 2023 for asthma testing and my IgG was in the 900s. Went septic from a bad diverticulitis episode in 2024. Had my sigmoid colon removed in 2025. Just recovered from another diverticulitis flare in another part of my colon. Doc was alarmed by my labs and referred me for an "urgent" immunologist appointment on Monday. From what I've been reading, IVIG or SCIG are the likely next steps. I know it's a basic question, but what should I expect during the next few weeks? Thanks for any information you have.

Diagnosed w/GBS in March after going to ER for TBI/Severe concussion. My memory of events starts with asking the person taking vitals Where am I, scared them terribly. They said I had been in ICU for 3 -4 days, undergone every scan, test, etc.. results from spinal fluid, confirmed GBS. IVIG treatment 4 infusion bags over 4 days provided my body handles it. Mid-way through bag 3 I start feeling better, after bag 4 I transfer out of ICU into ARU and begin learning how to stand and walk again over the next 3weeks. Trending upwards , getting around with a cane I'm sent home with outpatient follow-ups for continuing therapies. 4-6 weeks out, regression: legs on fire, strength plummets, and my balance is way worse. IVIG is scheduled to see if that calms things down, I'm hopeful because of the positive results from last time. Today was Bag 5 Infusion day.. never had any bad reaction or effects from the first 4, but by the time I got home, head is pounding, eyes super sensitive to light, my.head feels balloon like, hearing is worse, i can't sit up without weaving side to side, front to back and now I'm having those Flu-like symptoms chills and aches. How/Why is my body's reaction so different? Anyone have similar experience? How long will i feel like crap? Because of the head injury that I initially suffered my I can't remember all of the things he told me and it was my eyes I can't read the papers if they sent me home with at this time my poor eyes

35 year old female diagnosed with Sjogrens, small fiber neuropathy ( via. Biopsy) and large fiber neuropathy in 2021 along with a mirad of other issues. My small fiber neuropathy is severe full widespread body pain, especially in legs and feet. I experience fatigue, migraines, body flares, joint pain , issues regulating body temperature, and other sjogrens and neuropathy symptoms.

My doctor suggested IVIG in 2023 when I was not married yet with no kids and it was approved. Despite my suffering at that time , I didn’t go through with treatment out of fear of side effects, concerns about how I would work ,naive hope that things may improve on their own.

I got married in 2024 and gave birth to a baby 9 months ago . my symptoms are worsening and I am strongly considering going through with Ivig treatment to improve my ability to care for my baby and to improve my quality of life.

My doctor is recommending a 5 day Ivig treatment that must be done within a 7 day time period each month in the hospital. She did say at some point I could potentially transition to a nurse doing in home administration of the Ivig .

I work remote Mondays and Fridays and go into the office Tuesday-Thursday. I am a project manager so I could do the job completely remote but my employers wants people in person those 3 days. For my job I am leading meetings throughout the week for different projects.

My questions are:

1. What is your work arrangement during your treatment? Working remote, FMLA, short term disability, stop working completely, or some other option to have time for treatment? Are you able to work during treatment?
2. For those with kids how does the treatment impact your time and ability to care for your kids/family?

Hi there, i have cronic Brucelosis and Lyme, Bartonella and Babesia. I was diagnosed with Ehlers Danlos hipermovil too. I had a trombosis in my cefalic vein in 2021 (its a visube vein on the upper parte of the arm). IM NOT VAXXED for COVID. Doc says, after 10 years, the best would be to reset the immune system using IGIV.

Questions:

- DOES THE IGIV CONTAIN THE FAMOUS SPIKE PROTEIN FROM THE COVID SHOT?

- CAN I DO IGIV EVEN WITH THE TROMBOSIS FROM 2021?

Thanks

I have had 5, once a month IVIG treatments since my CVID diagnosis in October of 2025. Some things I have learned:

The needle is thick. Often it takes multiple sticks to get the needle in properly. Seems like the top of my hand works best but that stings pretty much for the entire 3.5 hours. Also, when they bandaged it this last time, I was gushing blood as I started to leave. Good times.

Hydration is key. Even if it is just so I can honestly say to the nurses prior to the procedure that I have been drinking water and tea constantly for the last three days…it matters.

While I have fortunately not had any measurable side effects, I have noticed the following things, my energy increases immediately following the procedure and the week before my next one I have next to no energy. I wonder if this is common. My skin is the same. By the end of the cycle what starts feeling like mild eczema feels like oh…leprosy?

I’m 68. Probably have had CVID for many years prior to the diagnosis. It’s heartbreaking to be surrounded by people much sicker than me during these treatments. Makes my own struggle feel selfish and whiny. I keep my chin up and endure as I know this is my new normal. The support staff at my facility has been terrific. The hardest part for me is knowing so much of my life is in the hands of the Pharmaceutical Industry and Health Insurance Company.

My sincere love and prayers go to all who find themselves in similar situations

I’m Michael
I have CViD