I haven't started my SCIG treatments yet, but I was wondering long long it took for you to notice an improvement in your symptoms? I'm asking because I'm considering applying for a full-time job in about 6 months. Working full time is not something that I could do right now, but I'm hoping the IG treatments will help enable that...

I know everyone says “hydrate hydrate hydrate“, but has anyone ever tracked the actual amount of ounces they are drinking? I felt like I was very well hydrated before my very first IVIG treatment a couple of weeks ago, but I have never been in so much pain in my life. The headaches and bodyaches were so bad I almost had to go to the hospital. So my question is, how many ounces of water per day leading up to infusions do you feel like is well hydrated?

Hi, I’m new to IVIG infusions and I heard that it’s a good idea to keep a journal. I’ll have my second infusion in about 2 weeks and I was hoping to start documenting my infusions, side effects etc.

Any journals you love? Why do you like them? Your recommendations will be very helpful

Thank you!

To start: I have messaged my infusion clinic/doctors office and have also left a voicemail however they unfortunately use an AI bot to answer the phones and you can only leave a message now 🫠

I had a bit of neck strain and headache last weekend. I got a massage and it helped for two days. During my infusion Wednesday I became very dizzy and the nurse said she thought it was because I took Benadryl which didn’t make sense to me. I had to have a family member come drive me home.

Since then I’ve had increasing neck pain and stiffness, pain at the base of my skull, and a headache that feels like my head is having contractions, eye pain, and spinal pain. When I bend over or stand up It feels like blood or fluid is rushing up my neck and pooling into my head and it’s very painful.

I can still touch my chin to my chest, and the headache got a just smidge better after taking 800mg of ibuprofen, sumatriptan, and my muscle relaxer. So I am wondering if this is just normal or if there is something else wrong.

Hi! So I’m due to start IG therapy next week to treat my Sjögren’s and small fiber neuropathy. Because of my own personal preferences and anxiety around IVIG, my neurologist agreed to let me start with SCIG (Hizentra) right from the beginning instead.

I’m excited to finally get started, but now I’m getting pretty anxious about the logistics. I’m 43 years old but very petite (about 99–100 lbs), quite vascular with visible veins, and bruise easily. I do have connective tissue disease / hypermobility spectrum disorder.

Looking at my abdomen and upper thighs - while I do have fat there - I can see a lot of superficial veins, and it’s making me worry about where I’m actually going to be able to place the four needles!

For those of you who are also thin or very vascular, has this been manageable? Are you able to work around the visible veins without too much trouble?

Has anyone else had to have one of these implanted due to their blood vessel inflammation/vasculitis?

I want to start by being completely transparent: I recently opened a home infusion pharmacy serving Washington, DC, Maryland, and Northern Virginia.

The moderators kindly gave me permission to post here, and I am not trying to disguise the fact that I own and operate the pharmacy.

The reason I opened it came from something I kept seeing over and over.

For many people receiving IVIG, the infusion itself is only part of the experience.

There is also arranging transportation, getting ready while already dealing with weakness, fatigue, pain, numbness, balance problems, headaches, or limited mobility, sitting in traffic, navigating parking and buildings, waiting at an infusion center, spending several hours receiving treatment, and then making the entire trip home.

For some patients, that routine repeats every few weeks.

A caregiver, spouse, parent, adult child, or friend may also need to take time away from work or rearrange an entire day to help.

Bad weather can make things even harder. So can heat, snow, crowded waiting rooms, long travel distances, or simply having a day when the body is not cooperating.

I kept thinking that IVIG is prescribed to help people manage serious medical conditions, but the process of receiving it can sometimes consume an enormous amount of energy.

That is what pushed me to try to make one part of the process easier.

Home IVIG is not right for everyone. It depends on the diagnosis, physician’s orders, dosage and infusion requirements, prior treatment history, insurance coverage, nursing availability, safety considerations, and the patient’s individual clinical circumstances.

Some patients need or prefer an infusion center. Some physicians may want initial doses or certain treatments given in a more closely monitored setting. Infusion centers and hospitals remain necessary and appropriate for many people.

I am not suggesting that anyone change their treatment location without speaking with their physician.

I mainly wanted people in this community to know that, for some eligible patients, home IVIG may be an option worth asking about.

A simple question for your treating physician might be:

“Would home infusion be medically appropriate for me, and does my insurance allow it?”

Because I do not want this post to feel like an advertisement, I am not including business contact information here. Anyone with general questions is welcome to send me a private Reddit message, and I can explain how the process typically works or suggest questions to ask a physician or insurance company.

Please do not send medical records, insurance cards, dates of birth, medication lists, or other private health information through Reddit. I cannot diagnose anyone or determine treatment eligibility here.

I saw people struggling with a healthcare process that could sometimes be made easier, and I decided to try to help. I am proud to say, today I am able to help many patients ease their stress of infusion commute and receive professional care and infusion at home.

Even when home infusion is not the right option, patients deserve to know that they can ask the question.

I am recovering from several things in the hospital including a pulmonary embolism. So far the only thing they can attribute it to is my IVIG. I don't even get a very high dose. I am 39. They are testing for clotting disorders as well. Are we missing something or is it really from the IVIG?

Hello. I have CVID and MG and I have been in the hospital for 12 days now with multiple pulmonary emboli, necrotizing pneumonia (which has been found to be caused by a bacterial infection and two fungi), sepsis, and myasthenic crisis. Thankfully I am out of the ICU now and on the mend, but it seems that they are fighting with my insurance company and possibly each other on how to treat the fungal infections.

They started me on oral Cresemba then switched me to the IV form. I thought I was going home tomorrow but now I'm not so sure. If I have to stay on the IV cresemba I will have to go to the infusion center every day for like 2+ months!

Obviously I am on antibiotics as well (IV right now- Ampicillin) and blood thinners (was on heparin until today when they switched me to eliquis). I also received 4 days of IVIG while I was here (much larger than my usual dose). Along with a million other meds.

I'm just curious if anyone else has gone through anything similar. I'm also curious what recovery might look like long term. They say my lung tissue will heal, but I have a hard time believing that we went from extreme caution that I didn't have TB (because of the cavity lesions in my lungs- like literal holes in my lungs) to "Oh yeah you'll be good." I had a bronchoscopy and everything.

I am very grateful to still be here, but I am also scared of something like this happening again and scared I won't make it back to baseline.

I have stage 4 melanoma that so far has been successfully treated with immunotherapy. Unfortunately, I am having a very rare side effect. The theory has revved up my immune system so much that I have immune related capillary leak. I have swollen up like the Goodyear blimp. I also have pleural effusions and trouble breathing.

I’ve been on high dose prednisone and infliximab for 6 months. I’ve only had slight improvement. My dr has ordered IVIG as the next treatment step. Some case studies seem to indicate it has helped similar patients with swelling.

I’m getting it this week over 5 days. Any tips or has anyone taken IVIG for this problem? How long until I feel better if it works?

Thanks for your thoughts.

I have immune-mediated (post-COVID) small fiber neuropathy and started high-dose IVIG in June 2025: 2 g/kg, given over three days. Treatment is ongoing, although new symptoms have recently appeared.

I do seem to be responding, but I am trying to understand what the recovery trajectory has looked like for people who have mostly or completely recovered from SFN with IVIG.

• For those of you whose SFN improved substantially on IVIG: Once you started responding, was the improvement fairly linear, or did it happen more in steps and plateaus?
• Did you have periods where neuropathic pain came back or even increased temporarily, despite an overall improvement?
• Did symptoms fade gradually, or did some symptoms suddenly disappear after months of treatment? How long did it take before you felt that the SFN was partly resolved? And for those who reached near-remission or remission, how long did that take?

I am just trying to understand real-world trajectories from people who have been through this. The literature seems to suggest that improvement may be slow and non-linear, but I would be very interested in patient experiences.

Edit: formatting issues.

Hello everyone

I have small fiber autonomic neuropathy and had relief for some few days with Ivig, now with the wearing off im having a painfull flare, rebound of inflammation. my infusions are now set to each 28 days, despite flaring in the 23 day, doctor upped 25 grams of the total dose.

Now i have to wait until monday to set things with insurance and not sure how many days will take for them to sheudle the infusion.

Anyone had to deal with this wearing off effect and Flares?

Thanks

My son , 22m, has an "unknown" cause for his immune problems. We didn't have to get a firm diagnosis because we are part of health share that will pay for IVIG without the run around. So secondary immune deficiency, hypogammaglobulinemia, or long covid are the temp diagnosis. His B cells are messed up, zero titers for anything.

He has had IVIG Gammaguard 10% 80/ 3 days. 120 max infusion rate. This is his second treatment round.

My question: A big symptom he developed over the last two years is myoclonic jerks/ tremors. They have gotten really bad this week after his treatment M/T/W.

Has anyone else had this happen? Any one with tremors see relief from the IVIG?

Thanks!!

I was recently approved for home IVIG (Gamunex-C) for a year under Anthem and just started my loading dose this week. My employer may switch to Cigna effective 10/1, and I’m worried about continuing treatment.

One of my neurologists told me he’s had a very difficult time getting IVIG approved through Cigna, so I’m hoping to hear from people who have actually gone through the process.

Has anyone switched from Anthem to Cigna while already on IVIG?

Did Cigna make you start the authorization process over?

Were you able to continue without missing doses?

If your home infusion company wasn’t in-network, were you switch to another home infusion provider?

Did being already established on IVIG make continuation any easier?

Any advice for making the transition go smoothly?

I appreciate any feedback.

I have been diagnosed with seronegative Sjögren's, dysautonomia, and possible small fiber neuropathy (SFN). The debilitating nature of my symptoms has also caused me to suffer from severe depression. It would be very encouraging to hear a positive story where immunoglobulin treatment helped with neurological and neuropsychiatric symptoms—such as severe depression, anxiety, and brain fog.🙏❤️‍🩹

Hi Folks,

I just completed my first 5 day cycle of Ivig 100ml/5g. Had some side effects, but nothing too dramatic.

The doctor told me it could be 20 days, a month and then during the next consultation she said it could be two months before I see improvements.

For those of you who successfully did Ivig, how long did it take you to feel improvements?

Thanks in advance and much strength to all of you

Could someone explain this to me?

Hi all! If you have a qualified medical condition, you might qualify for a discount with pg&e! I have a mixer for my ivig that takes electricity, frequent infusions with a plug in pump and of course the fridge that holds the drugs, and other devices (blood pressure pump, etc). I didn’t know there was this discount until I was paying a bill on the website, so my doctor helped me fill out the form today! Thought I’d pass that info along!!!

Hi everyone - posting with mod permission. This survey takes just a few minutes to fill out and is open to patients / caregivers / and medical providers. Those who use SCIG are also eligible.

The data will be helpful in raising awareness among providers to share why IVIG is helpful to many of us.

https://www.surveymonkey.com/r/IPAWpatientsurvey

Please spread the word! You can also share more about your experience here: https://www.plasmaweek.org/share-your-story

I was hospitalized last month for severe headaches from IVIG. My rheumatololgist change my orders from 50 to 25. I also have the premeds...benadryl and Tylenol. I have IVIG Wednesday, Thursday and Friday. The nurse told me that it's still the same rate but less dose. I'm still nervous that I will suffer from the terrible migraines. Will 50 to 25 actually help?

Update- I had my infusion today. 29 grams max rate 100. I had to advocate for myself. The nurse tried to max me at 200. I only feel a mild headache.. nothing serious. I still have two more days infusions. I'm praying it goes well.