My IVIg to SCIg saga - Practical steps to transition safely from IVIg to SCIg at home

I live with Lewis-Sumner syndrome, a rare variant in the bizarre CIDP family— as said many, many times before, why have a pain in your ass when you can have a mystery illness that ages you ten years just trying to pronounce its name?

I was diagnosed in 2022 and treated with IVIg until 2025, when the opportunity arose to transition to SCIg.

Weighing the pros and cons of SCIg compared to IVIg, the decision felt like an easy one.

You also need to consider whether you’re able and willing to learn all the procedures involved—which is, by all means, a lot to take in and overcome.

You have to be informed and ready.

It’s not an easy decision. When faced with something like this, you have to make choices based on your needs and preferences.

My needs and preferences to stay away from hospital stress were very strong.

I was growing more and more tired of it.

I started my SCIg transition on November 10, 2025.

By January 30, 2026, I considered the process complete: from now on, I am officially on SCIg.

Switching from IVIg to SCIg: My Real-Life 10 Step Guide

1. Talk it through with your doctor first.

Make sure you’re clinically stable on IVIg and have an honest chat about what switching to SCIg might look like for you—the good, the bad, and the mildly annoying.

I was stable, I did talk to my doctor.

I can’t pretend I agonized over the decision.

2. Figure out the dose together.

Your doctor (in my case, my neurologist) will calculate your monthly SCIg dose based on your IVIg. It usually gets split into smaller, more frequent doses (weekly, biweekly, or whatever rhythm fits your life).

As for Ig dosing—what the hell do I know? That decision was entirely up to my doctor.

I was only able to decide between a once- or twice-a-month schedule.

That was it.

I had two options regarding the dosage: either go with 2 x 300 ml Ig, plus 2 x 15 HY every two weeks; or 4 x 300 Ig and 4 x 15 of HY.

Why put myself through feeling uncomfortable twice a month—walking around with a ballooned stomach, feeling queasy—when I can handle it once a month?

It’s less planning, less hassle, and no “jelly belly” discomfort; less stress through the whole, almost day-long process twice.

I picked Fridays for my sessions now, because it gives me the whole weekend to recover before Monday.

My stomach is usually swollen and a bit sore, so I can take things easy over the weekend. Of course, life can be a bitch and throw surprises my way, so I stay flexible.

With once-a-month treatment, I get three weekends free where I can move around more freely, as long as I return to my “headquarters” for the session.

Even though the dose is doubled, my stomach seems to take the abuse just fine.

3. Get proper, hands-on training.

A nurse will walk you through injection techniques, site prep, pump use (if you’re using one), and needle disposal. It feels overwhelming at first, but you really do get the hang of it.

I had a big team of nurses helping out (sadly not because I am princess of Qatar) because nurses from Father Pio Hospital (Przemyśl) had to get this training themselves – it’s a novelty in Poland, so they wanted to gain experience.

4. Build your little “treatment corner.”

Gather your supplies —syringes, pump, infusion sets, antiseptic wipes, dressings, sharps container. Once everything has a home, the whole process feels way less chaotic.

I had to learn everything about what I found in my “pouch” and get used to it.

It felt very mysterious at first, but it’s completely “overcome-able.”

The “treatment corner” is my bedroom—with (I can’t stress this enough) my very own bed, my desk, and a bathroom where I don’t have to pee in downhill-skiing style.

Not a hospital room, not under harsh fluorescent lights, not surrounded by all the usual hospital commotion.

This is my space, and it makes all the difference.

Here’s why I personally prefer SCIg over IVIg.

5. Do your first session with supervision.

Having someone there the first time is oddly comforting. It helps with confidence and troubleshooting any “uh… is this normal?” moments.

After SCIg training and starting it at home, I was offered home care nurse help by my family doctor, but I declined.

She wouldn’t have known what to do anyway, and I felt it would be too much work going over SCIg and explaining everything to her. It just didn’t seem very useful.

Having family nearby felt like enough support, just in case something goes sideways.

6. Ease into it (if your body prefers that).

Some people transition gradually with a bit of IVIg/SCIg overlap; others switch straight over. There’s no one-size-fits-all—your body gets a vote.

And gradually transitioning I did, all Nov/Dec 2025 was “easing” into it.

7. Rotate sites and be kind to your skin.

Rotate injection sites, use cold packs if that helps, and don’t be heroic about discomfort. Your skin will thank you.

I tend to be a bit heroic about discomfort when I know it’s a one-time situation.

With CIDP and SCIg, though, this is clearly not a one-off, and I can’t just muscle through this kind of discomfort forever.

I’m learning to be more mindful and smarter about it. I’ve also found my own ways of soothing the skin irritation, bloating, and soreness—but that’s a whole other post.

8. Track what’s happening.

A simple log of infusions and how you feel afterward helps spot patterns and makes follow-ups with your doctor way more useful.

I do keep a log of my infusions—I got it in my starter package along with the pump, the Takeda cooler, the mat, and all the other SCIg necessities.

These logs include stickers from the Ig bottles (with the series numbers on them), my vital signs, and the spots where I had needles injected. They’re meant for my doctor to monitor, but they’re also super handy for me to remember the details of each infusion.

9. Have a “what if” plan.

Know when to call your provider and when something is just part of the normal process. Having a plan like that really lowers anxiety.

The biggest problem I’ve encountered so far was the pump stopping because it caught too much air.

I discussed it with my doctor, and we decided that changing the line mid-infusion seemed like the best solution.

Then it just wouldn’t start again.

That is it so far – if there is more, I’ll note.

10. Don’t do this alone if you don’t have to.

Home care nurses and patient support groups can be gold when confidence dips.

Borrow courage where you can—it counts.

I am fully aware of the value of family and group support.

I recommend it as self-care, for confidence and safety.

WHY I SWITCHED FROM IVIg TO SCIg

The prospect after adapting to the new Ig treatment method was nothing but splendid: no more 1.5-hour, one-way trips to the hospital through torrential rain, snow blizzards, minus 20°C Siberian frost, or Sahara-like sunshine (a touch of dramatic embellishment—for self-amusement is my thing).

And that’s just the journey; then comes the full hospital stress package, rich in experiences that left me feeling hungover and in need of a solid week of recovery.

Was it all cool and an easy ride, though?

NOT

ALL

My first at-home SCIg was… memorable, and that’s me being polite.

I had plenty of doubts about my ability to handle everything—anything could go wrong.

The weeks leading up to it were a weird cocktail of stress, Googling, overthinking, and pretending I was “totally fine” while my nervous system quietly planned a coup.

Then the moment arrived. Was I brave? Yes. Was I calm? Debatable.

But had to show up, do the thing.

I walked away with a brand-new skill: proof that I can do hard, scary, medical-looking things from the comfort of my own home.

[Photo source: my own, taken during my last SCIg infusion.]

These four bottles contain Ig (immunoglobulin) — my final dose, administered under the skin of my stomach.

It’s a lot of dense liquid. The small “baby” bottles attached contain HY, given before the infusion to help create space for the star of the show.

[Photo source: private “collection”]

Before and after the infusion.
It’s wild how much the body can change in such a short time.
A lot to take in—literally and figuratively—and it shows.

I’ve had a stressful couple of weeks, experiencing, observing, and adjusting to my new CIDP treatment routine. My very tiny fan base knows I enjoy a good old-fashioned pity party—but I also give myself hugs for being brave and resilient.

The inspiration for a little self-hugs comes from my friends across various CIDP support groups.

(Through plenty of trial, error I’ve learned that…that English-speaking chronic illness support groups have a “lighthouse” mentality, in contrast to the typically grumpier Eastern European “crab basket” approach.)

They emphasize and strongly encourage this kind of self-love—especially when you’re dealing with a bitch of a chronic disorder.

Celebrating small wins weekly—or even daily if you feel like it and inspiration strikes—is a common practice in those circles.

I’ve taken this philosophy to heart and stick with it like my life depends on it—and it pays.

First and foremost, you need to overcome the fear of self-administered medical treatment. I quickly discovered that childhood games of playing nurse with teddy bears do not prepare you for this.

You learn quickly, but the self-poking hurdle is real, and remembering the full SCIg procedure sequence can be intimidating—making this little “operation” not for everyone, which I entirely understand why it might be.

That’s my POV.

(For the very few still living in the caves of Cappadocia and completely out of touch with modern social media, but reading my blog, “POV” is the trendy abbreviation for “point of view.”)

Final thoughts.

This post is -God forbid – not medical advice—just humble CIDP warrior experience.

And my experience is that it seems almost impossible to skip any of these steps when switching from IVIg to SCIg.

They might vary slightly—there’s no one-size-fits-all process—but any modifications are usually minor I’d say.

If anyone decides to go that route, these steps are essential.

What else is essential when switching?

Know all the hurdles.

Know that it requires proper training.

Know that things might not always go the way you want—but that’s part of the process: learning, adapting, adjusting, and constantly weighing the pros and cons for your CIDP treatment, wellbeing, safety, comfort, and health.

These are decisions that are always present when you live with a chronic illness.

That’s just the reality of it.

Harsh reality, I may add.

Disclaimer: Everything shared here comes from my own journey with CIDP and is meant for reflection and support, not medical guidance—your healthcare team is always the best source for personal medical decisions.

SHARING IS CARING – IF THIS SUPPORTED YOU IN ANY SMALL WAY, SHARING IT MAY SUPPORT SOMEONE ELSE WITH CIDP, MMN, GBS, OR SIMILAR CONDITION, AND SUBSCRIBING KEEPS THIS CIRCLE AND AWARENESS GROWING

For more information regarding switching from IVIg to SCIg when battling CIDP go to these sources:

My IVIg to SCIg saga – Practical steps to transition safely from IVIg to SCIg at home

Switching from IVIg to SCIg: My Real-Life 10 Step Guide