After several months on IVIG, I recently switched to subcutaneous administration (infusion) of immunoglobulin, aka “ScIG”. As per usual, I went looking for information on what it was like and comparisons to alternatives (such as IVIG) and couldn’t find much. So this post is everything I wish I knew before I decided to switch to ScIG and what would have been helpful for the transition and getting adjusted to subcutaneous infusion of immunoglobulin.

Why I thought about ScIG

For context, I don’t have the indications (diagnoses) most people have for IG, whether that is IVIG or ScIG. So my situation doesn’t necessarily translate to other diseases: I won’t speak specifically to symptoms etc. in detail, because it’s not relevant to anyone else, but what I will focus on is the general situation. My background is also relevant: I went on IVIG with a protocol of two days every 4 weeks. I noticed an improvement to IVIG in the second week of this cycle, but I had increasing symptoms in weeks 3 and 4. My doctors were not super experienced with (did not have many patients on) IVIG and weren’t aware that this is common, depending on what type of disease you have. I went to two days every 3 weeks. I still had the week 3 “dropoff”. We transitioned me to one day every two weeks, and that cut off the ‘dropoff’ of the cycle, but things still weren’t great and I was still experiencing the symptoms that caused me to need IVIG. So – this told us that my thing is autoimmune related, because IG is slightly quieting things, but that IVIG isn’t a perfect fit for me. (However, there is no other alternative treatment.) Additionally, because I was getting frequent IVs, my infusion nurse(s) gave me a heads up that at some point I might want to discuss a port with my doctor, because I am “one valve-y human being”. My infusion nurse who commented on this indicated it’s common in weight lifters (I am not) and people who do a lot of cardio (I guess I am – see ultrarunning). This can make it more challenging for IV access even though I only ever had 1-2 failed first IV’s, they wanted me to be aware that a port may be something I would need to or want to transition to. But, the idea of a port made me really nervous, in terms of the surgery required and the healing required from that. Plus I had some grief thinking about how it would be ‘committing’ me to this long term plan of IVIG, which no one really wants to do. Especially when, see above, it’s not perfectly managing everything. I started doing some research into ScIG, which my doctor was also aware of but has had zero patients on, so I had to do a lot of the research myself to understand the plans and how to transition, what to ask her to write for the order, how to push back (!!!!) on the pharmacist when they tried to change the plan, and get the timing right when transitioning from IV to ScIG.

What I knew about ScIG is that it would be subcutaneous, infusing the volume of IG under the skin in a similar way to that of insulin from an insulin pump. I knew it was different, though, in terms of the volume of liquid, and that it would involve using infusion sites and tubing for several hours every week – but then the sites get removed, so it’s infuse & done rather than being similar to an insulin pump site that stays inserted and delivers a constant infusion. The idea is once per week (although some people split and do twice per week) infusions that I could do by myself and at home once I got trained.

Pros/Cons – compared to IVIG

One big obvious advantage of ScIG is doing it myself, at home, on a schedule of my choosing. I wouldn’t have to schedule appointments and drive 30 minutes each way and deal with other people and the inconsistencies of them swapping my nurses out last minute. (Doesn’t sound like a big deal but when you run into substitute infusion nurses who unsolicited and out of context suddenly ask you if you have tried treating your (type 1) diabetes with cinnamon, and you have to point out that no, you take insulin because not taking insulin would kill you…well, the rotating cast of characters has a variety of risks in terms of how they do things infusion-wise, too.) Theoretically, ScIG should save me time, although that’s not true at first (more on that below), even though I would be doing it once a week.

Another advantage is the subcutaneous route, e.g. infusion under the skin rather than through IV access. But this is also a disadvantage, because the volume being infused is a LOT (and mine is larger than most due to my body size, it is dosed based on weight) and requires several needle sites and then infusion under the skin results in ‘pancakes’ in each area (more below). There’s the possibility of allergic site reactions happening, which fortunately didn’t happen to me, so I didn’t have to deal with red, itching, sensitive skin during or after the infusion – but I was aware that it could be a short or longer term issue.

The next advantage is not only time savings (eventually) but flexibility. It’s a shelf-stable liquid, you don’t have to keep it in the fridge. This makes it – and the supplies and the mechanical infusion pump – easy to travel with. In fact, I did my first travel ScIG as my fifth week, and it was flawless, just like at home. The only ‘concerns’ I had was remembering to bring the bag with me on the trip and not accidentally leaving it on the plane.

Cost is another big relative advantage of ScIG over IVIG. IG is expensive. IVIG is expensive because you’re paying for facility time and nurse time, and IG itself is expensive. Weirdly, even though it’s the same thing, the subcutaneous formulation of IG is less expensive. I used an LLM to research and guesstimate costs and thought the IG itself would be the same and I’d mostly be saving a few thousand dollars per month on the facility/people time. Instead, once I saw my first claim for ScIG, I was surprised that the ScIG IG formulation was a lot cheaper per gram! (It’s still expensive: but it’s less expensive formulation wise, which I wasn’t expecting).

The major cons are having to do all this (below) myself and having to subcutaneously infuse. It can feel really overwhelming when getting started, and I’m also nervous about long-term site management. This is in part because I have type 1 diabetes and have worn/used an insulin pump for 23 years, which involves rotating those sites around my body. With ScIG, you use the same general areas of the body to infuse, but it’s actually limited further because some of the areas you’re supposed to be able to use (like back of hips or arms) are impossible to do by yourself and/or aren’t feasible because of how long the ‘pancakes’ or fluid depots take to absorb, so it would be uncomfortable. This means my legs are my prime ScIG real estate, and occasionally abdomen – but I use my abdomen (and arms and back of hips and upper butt) for my pump sites and don’t want to take away my abdomen from pump site territory, so I have fewer site options than an average person looking to start ScIG. Again, unique to my situation, but managing the number of sites (below) can feel overwhelming when you have limited real estate.

None of the cons, for me, outweighed the reasons to try ScIG, but I was aware that they might eventually be reasons why I need to discontinue.

Onboarding/getting set up nightmare

I expected getting insurance approval and getting set up to start ScIG would be hard, with the hard part being prior auth from insurance. Actually…no.

The hard part was getting the doctor’s office to get the prescription/orders to the right mail order infusion company, then getting the mail order infusion company to do everything in a timely manner. I gave them a 6 week heads up that I needed (wanted) to start on November 4, because my last IVIG would be October 28, and I needed to start ScIG exactly one week after the last IV infusion, because it takes a week for ScIG to absorb and ramp up activity. The infusion company took dozens of phone calls with various people to get things to the point of finally submitting the prior authorization to the insurance company, who immediately within hours approved it. (They probably knew it was going to be a lot cheaper than IV, which I was already approved for.)

(This is likely unique to my situation). But then there was still delay after delay of the pharmacist being confused about how I would start, because of the “high” volume I was on. (It’s a normal volume for my weight, but most people who end up on IG therapy are a lot more frail and often lower body weight than I am, at the start of whatever this disease is. Thus, more volume than they usually see.) The IG formulation I’m on has FDA limits for how much volume per needle site you can do the first week and the rate per site for the first week. Those limits meant I needed to use 8 needles the first week, but that was doable: it’s actually in the infusion pump manufacturer’s guide to use 8 needles, which FDA says is allowed. But for some reason the pharmacist kept saying only 6 was possible and that I needed to split to do the dose in two days the first week, 6 needles each time. I kept telling him 8 was allowed; I was looking at the pump manufacturer’s guide AND the 510k approval documentation from the FDA. Finally he told me he was looking at the website from the pump manufacturer which ‘said’ 8 was not allowed. He finally gave me the URL, I went to look…and it said no such thing. It’s a basic calculator that was only configured up to 6 needle sites, because (7 or) 8 are less commonly needed, but it’s possible either by running two pumps each with 4 needles, or, PER THE FDA APPROVAL, using a ‘y-connector’, which is an approved part they just order just like the infusion sites. Neither pharmacist nor pharmacy manager had ever seen/heard of it and even though they could order it, it just broke their brains over and over again, but after 8 phone calls we finally got everyone sorted on the fact that I would do one day, 8 needles, and that was that. Then I got passed to the scheduler who said after the 6 weeks advance notice, no one had scheduled me, and they couldn’t send a nurse to me on November 4. WHAT! Then there was back and forth about how it needed to get pushed back a week – which means I needed to go get IVIG again and then ScIG a week after that. I was going to do that, but it turns out I was essentially evicted as a patient from the IV place I go to (!) without knowing it, so they would’ve had to re-set me up completely with new prior auth etc. Finally, luckily, we found a slot for my ScIG start/training at an ambulatory center, and so the plan was to go there instead of a nurse coming to my house for my first infusion/training.

TL;DR: coming from IVIG, insurance approved the swap to ScIG without any denials. The infusion pharmacy was weirdly the process nightmare, when they shouldn’t have been. I am simultaneously mad and thankful that I was informed and aware enough to know what the plan should be, advocate for actually following that plan, and questioning if someone says something that doesn’t make sense. Sometimes they’re doing things the easy way or the way it’s been done for other people, even when that is irrelevant to your care. After this first infusion though, it gets easier, because after this they’ll be mailing a box of supplies to my house every month.

First ScIG (training, nurse supervision)

I was really nervous going into my first ScIG, in part because I didn’t know what to expect. Thanks to people who post pictures and info on Instagram and Reddit, I had searched for “ScIG” and “subcutaneous immunoglobulin” and the IG product’s name to at least see pictures of what the sites and infusion pump looked like, which helped. But I knew I was going to be using 8 needles and I was nervous that they would hurt and that the infusion would hurt and I wasn’t sure how long it would take for things to stop hurting after. (Spoiler alert: it was a LOT better than I was fearing of the worst case scenario, comfort-wise!)

The first appointment at the ambulatory center took a lot of time because we had to do onboarding type stuff and open boxes and a lot of supplies. We got everything set up and laid out, and the nurse did the priming of the tubing and inserted the first two needles for me. Then I did the rest. I was pleasantly surprised that inserting the needles did not hurt – which I thought was because we used lidocaine cream (more on that below), and covered it with tape and let it sit for 20 minutes before we started. I found it slightly challenging to gently hold the plastic ‘wings’ of the site after I had inserted the needle while I placed the large piece of tape down, to securely hold the site, but this is probably because of the muscle weakness/clumsiness (why I’m getting IG), and I’ve gotten better over time. But that was the hardest part of the first infusion, which tells you that it wasn’t really that hard to do. Once you get the needles placed, you put the first syringe (attached to the tubing and your sites) into the pump, and pull back the spring-loaded plastic mechanism: it’s not electronic, let alone powered, like an insulin pump, just a spring-loaded plastic device that applies constant pressure to the end of the large syringe. Then you turn the pump on (a mechanical on/off switch) and it basically makes some noise as it pushes the tab at the end toward the end of the syringe, and then that pressure is what starts the infusion. (Pressure on the liquid into the tubing; not pressure on or near the sites). I did feel when the infusion started and it felt a little uncomfortable – not painful. But I got used to the feeling since it was constant and it was fine from there on. Because of the volume I’m on, I swap cartridges a few times during my infusion, which is easy (twist one off, twist one on, re-start the pump). At the end, you stop the pump, gently pull the tape off the sites and pull the site straight out, put gauze pressure to stop any bleeding, then pop a bandaid on, and you’re done.

All in all, it was better than I expected, but I did still feel overwhelmed at the idea of doing this all every week, even though I knew I would gradually decrease the number of needle sites, which would help. But the thought of doing the next one a week later felt overwhelming, especially because it took about 18 hours after the infusion was done for the fluid depots or “pancakes” as I call them to fully absorb, and my legs were uncomfortable. I didn’t want to get bumped or bump anything where I had infused and I didn’t want to let the cat walk across my legs. Subsequent ScIGs though have confirmed (see below) that it has gotten more comfortable over time and if I do have an uncomfortable site, it is pretty much all gone 16-18 hours after my infusion ends, so it doesn’t drag on.

I left the ambulatory center with the pump and supplies I would need for the next 3 weeks of infusions. I went home and rested the rest of the day, because my muscles were worn out from the way I sat in the infusion chair (and was tensed with stress). That’s probably specific to my situation.

After I got home from my first ScIG, I had boxes of supplies to go through. I waited a day, then when I had more energy, sat on the floor and spread everything out and sorted it into piles so that I had a bag with the supplies (IG boxes of cartridges; needle sites; tubing; gauze; bandaids; etc.) divided up for each week. That way, each infusion I just had to grab a bag and the pump and wouldn’t have to sort through a mountain of supplies. That was a good call, because it made it a lot more simple for my first at-home, by myself, ScIG.

Note: they offered to send a nurse to my home for ~2 more visits or that I could go back to the ambulatory center, and my insurance would easily cover that. But, I felt confident after the first one, because I also came home and made notes of what I would do and checked my supplies above and had anchored the process in my mind so I felt confident doing the second one myself.

Second ScIG (home, solo)

I was nervous, again, about doing my next ScIG as my first one alone, because it felt like there were a lot of supplies and steps to do. This includes starting with “pre-meds” of taking Tylenol and a Benadryl in advance. There was also putting on lidocaine cream in the spots where I was going to stick the needles. For the second infusion, I was “only” doing 6 sites, but that’s still a lot. I put on lidocaine cream and stuck squares of press and seal over them. This was recommended by the infusion nurse, and also because they didn’t send tape in my box to accommodate doing this, even though they did send lidocaine cream. The press and seal seemed to work ok, but it added time where I needed to do it before I started setting everything up because it needed to sit for 20-30 minutes. I also had to be careful not to brush off the press and seal, so that felt physically stressful. Once I had everything set up (all the cartridges opened; tubing connected to sites; the tubing primed; the pump set out), I was able to sit and pull off a press and seal square; use gauze to wipe off the cream; use an alcohol swab to clean the area, then grab a needle and pull off the rubber band, pull back the wings, remove the needle guard (and put the rubber band and needle guard somewhere I wouldn’t drop later for the cats to eat), and insert the needle. Like the first time, I found placing the tape on each site challenging. The ‘site prep and insertion’ process felt like it took forever. Then once that was done, I unclamped my tubing and turned the pump on, and whoosh – we were off. Like before, I jumped a little when the infusion started but it didn’t bother me after that. Everything went smoothly, but I did feel like I noticed the pressure over time in a few of the six areas (but not all) during the infusion. After the infusion was done, I did the same process of peeling off tape gently, then pulling off the site, then gauze pressure, then bandaid. Then I was done! I was pretty pleased with myself but again, exhausted from sitting up and doing it, so I decided I would do my next one laying down to save muscle energy.

I was satisfied with only having one training and glad I didn’t bother asking for a second nurse visit to supervise, so I was able to do this on my own schedule. I realized I liked doing it starting in the early evening so that when I would’ve been home sitting around anyway…I could be home sitting around and infusing while I read or listened to a podcast. I was already appreciating the schedule flexibility!

Like the first infusion, my legs were uncomfortable after the infusion, and overnight. It again took about 16 hours before that feeling went away. I also noticed a few days later that one of the sites that had bled a little when I pulled the needle out, had a slight bruise. I made note of that so I could avoid the area for the next few infusions (more on site rotation below). But other than that, no issues with the first solo home infusion, which was my second ScIG.

Subsequent ScIGs, site rotation

Each week has gotten a little easier, to the point where (after 5 weeks) it now feels routine and manageable.

It does help that I was transitioning down in the number of needle sites. During week 1 I used 8; week 2 I was able to use 6 (because I wasn’t limited by the first week safety limits on volume per site); and week 3 I went down to 5 sites.

I didn’t realize at first but even if you want to use fewer sites than you have needles for, e.g. you have a set of 6 sites and you want to use 5, you can clamp one of the sites and only insert 5. So even though I was sent home with 6 and 4-sites for my three weeks, the pharmacist confirmed over the phone that I could clamp and do 5. I actually ended up doing 5 sites in weeks 3, 4, and 5. I wanted to transition to 4 sites, but this will result in a larger volume per site and take a little bit longer. I have one more set of faster tubing (which is what determines the speed; the pump applies constant pressure and the tubing determines the speed) but I can’t switch to it until week 6, so I stayed on 5 sites with the medium speed tubing for a few weeks. However, in week 3, I did notice a few sites bruised underneath the skin. They weren’t painful, but I could feel a slight lump exactly where the needle had been under the skin. The pharmacist confirmed this was likely a hematoma (i.e. a bruise or tissue clot) from the site insertion and if the skin was not raised, red, spreading, etc – it should heal and go away on its own. Most of them have, but I have one that is still there three weeks later. It’s not a big concern, but I am keeping an eye on the rate at which I get these bruises and whether that impacts what areas of the legs I can infuse in. It also factors in to wanting to use fewer needles per week, because these lumps seem to be more related to the simple presence of a needle under the skin than to total volume per site or the speed: I will confirm the latter when I graduate on week 7 to the fastest tubing speed possible. It doesn’t happen with every site, so I’m not sure if that’s just a leaner area (where I have more muscle and less fat) or if it happened to be somewhere I accidentally bumped or pressed it down while taking off the tape, etc. Regardless, because of some combination of any of those reasons, I’m planning to eventually go down to 4 sites per week. This will make it easier to rotate, because I can do one each on the inner and outer thigh of each leg, and it will be easier to track week by week. In the meantime, in week 6 I also tried shorter needles. Originally, I was given 9mm. 6mm is also an option, and this matches the length of my insulin pump infusion sites, which suggests it should be sufficient length to reach my subcutaneous tissue with ScIG, too. The insertion was a little easier (because I have to push in 3mm less of needle length into the skin) and I’ll need a few weeks to see if that reduces my under the skin bruising rate.

I was very cognizant the first two weeks about making sure my needle sites were more than 2 inches apart. My first week I had all 4 needles in a square, two inches apart from each other. That was technically fine, but my ‘pancakes’ or fluid depots ended up bumping into each other and made my legs more uncomfortable. For week 2 I did kind of the same thing, avoiding the previous needle areas and being two inches apart, but one set of pancakes touched whereas the other leg and other areas didn’t…and those areas with pancakes that didn’t touch were more comfortable. I realized I needed to optimize for enough distance apart so the pancakes don’t touch each other, and preferably away from last week’s pancake spread area. That causes me to have to pay more attention when I am still using 6/5 needles a week because I’m focusing on my legs. The more I keep the sites separated, the easier they are. In fact, I began using my inner thighs in week 4 and week 5 and while some people say (and the nurse repeated to me) that they are ‘sensitive’, it actually did not hurt at all to put the needle there – even without lidocaine cream in advance – and I couldn’t feel the infusion during or after. Awesome. That gave me a lot more real estate than just my outer legs, and since I have a lot of muscle on the top of my thighs but plenty of fat on the inner and outer side thighs, I try to target using there, and keeping them separate from each other + last week’s sites works really well.

I did on week 3 also try abdomen sites for the first time. I didn’t want to use this area much because I want to preserve it for insulin pump real estate, but I tried it. It was fine, but I also have to be cognizant of pants waistbands/not putting pressure the next day while it’s still sensitive. It doesn’t hurt by default, but it is uncomfortable to have tight clothing against the pancake, whether that’s a tight legging/pant leg or a waist band. Or in my case, a back brace that I wear – so I’ll only use my abdomen site occasionally when I know the next day I don’t need to be wearing my back brace for riding in the car or sitting up unsupported somewhere. (Again, much of this is unique to my personal situation).

Why did I stop using lidocaine cream? A few reasons. One is that it was a hassle and added time to needing to do that then wait 20-30 minutes before I started. It also involved using gauze to wipe it off and then alcohol swab and then go to insert the needle – but by the time I wiped it off and cleaned it, I couldn’t always see the spot that had been lidocaine creamed! So one time I ended up inserting definitely not in the cream spot and I could tell a difference, but it didn’t hurt. So the next time I tried without it (week 4) and it went fine. I have had one (out of the 12) needle slightly hurt as I put it in but that’s because I went super slow and didn’t quite break the skin so I need to try again. Now, since I’m not doing lidocaine cream, I find it easier to use the alcohol swab and clean a much larger area (think a two inch square) rather than just cleaning the inch around the lidocaine cream spot and that way I can just pinch the area and insert without having to find the magical spot and worry about whether it’s right, and it’s faster. The other reason is because I looked it up and apparently you do need to put tape (not just press and seal) on the lidocaine cream so it can get through the skin barrier. Press and seal keeps it from getting on your clothes but doesn’t actually help it get through the skin barrier, so it’s mostly placebo. Argh. I’m frustrated that the nurse gave me wrong information and that the pharmacy didn’t send tape in the first place. I could have asked them to send it in the next box, but I was tired of arguing with them and it doesn’t hurt and it is a lot easier (for me) without the whole process.

The other thing that has made things easier over time is that weeks 3-6, I chose to lay down in bed while infusing. I sit up to get everything inserted and start, then lay down and read a book on my phone or listen to a podcast. This may be unique to my situation with my muscles, but I found that while I’m still a little tired the next day, it’s a lot more manageable when I rest during my infusion.

TL;DR (this section): keep an eye on the ‘pancake’ or fluid depot of where the liquid goes. If you’re like me, you may find that the tissue there is sensitive for a week or two and so while you can insert nearby for your next infusion, you may (like me) prefer to keep them spread farther apart to limit discomfort.

Traveling with ScIG

One of the major benefits is the ability to travel with your ScIG. You can really do it anywhere and it’s nice that it’s shelf-stable, so other than not letting the IG itself get too warm (package says keep it below 77 F and also don’t freeze it), it’s not something you have to think much about. If you’re like me and you take each shipment and organize it so each ‘week’ is in a bag ready to go, it’s as easy as being at home to grab the week’s bag + the pump bag and taking it with you.

The one thing to think about is managing your ‘sharps’ at the end of the infusion. My nurse told me I can use scissors and cut the needle ends off the tubing, and put the needles in a sharps container, and throw everything else (tubing, tape, cartridges) in the trash. To save space in the sharps container, she suggested cutting the needle ends off. So at the end of each infusion, when I pull a needle site out, I place it into a (very) small tupperware container and use scissors to cut the tubing. The needle part drops into the tupperware container. I do that with all needles, then put the lid on and give it to my husband who goes and puts it in the big sharps container in the other room. When I did my first travel ScIG, the only supply that I didn’t bring with me and needed was a pair of scissors for this (and opening some packets), but we were staying at an rental house that had them. Otherwise I would’ve found a way to wrap them thoroughly in bubble wrap or similar to bring them home and then dispose of them. But since I have this little tupperware container (one inch tall), I put labels on it that says “SHARPS” on the top and the side in case I need to show TSA my bag and disclose yes that I have sharps but they should be labeled and sealed for safe transport while traveling.

When I’m at home, I have been using a little laptop table set on the bed that I put my sterile drape on top of and lay out supplies onto. During my trip, I ended up cleaning and using a ‘cookie sheet’ with a lip in the same way, putting the sterile drape on top and using it like a big tray to hold everything. That was actually so convenient I’ve switched to doing that at home, because it makes it easy to set everything up and do my site insertion, then move the tray and myself onto the bed to lay down for the infusion and have everything I need (other cartridges during; gauze and bandaids and scissors at the end) in arm’s reach.

Resupply and dealing with the pharmacy

After my first infusion I was sent home with the rest (three weeks’ worth) of the supplies. I got a call from my patient navigator from the infusion company two weeks later to talk about my next box. I needed to get it early because of travel after the Thanksgiving holiday, and luckily they had no problem shipping it the Tuesday before Thanksgiving. They went over everything that would be in my box and I was able to make requests about which number of sites and tubing I wanted. I was also able to speak to a pharmacist (this time, someone with a better clue about things) about the ‘lump’ bruises under the skin and my needle choices and talk through things, so generally that felt like a smooth process. I also ran into an issue where I got my supplies and had everything they ordered, but they didn’t send me more gauze. Because I had been doing lidocaine the first few times, it meant I used up my box of gauze wipes for the first month and they sent me zero gauze the second month. But I called them back and they shipped just a box of gauze to my doorstop easily and without hassle, which was nice. So thankfully despite the annoyance of onboarding and getting set up, the re-order process has generally been fairly reasonable to deal with and easy to correct mistakes. That’s a good reason to sort your supplies within a few days of them arriving, and put them into each ‘week’ of what you need, so you can see if you’re going to run out of anything. In my case, I know I need to make sure there are more bandaids in my third box, because I sorted the end of my bandaids into the second box’s worth of supplies.

How much time does ScIG take? Does it save time compared to IVIG?

The first infusions take longer than the others, especially the very first one where you are limited to very conservative per-site volume limits and per-site flow rate limits.

The rest of this is influenced by how many sites; what tubing speed; and what volume you are getting, which is determined by your body weight. The fewer needles means it actually takes longer (despite the same size/speed of tubing) because at some point the infusion dispersion under your skin slows down. Therefore, more needles is faster, so if you want to prioritize time saving, you would prefer more needles (and faster tubing, if you can tolerate the higher speeds). For me, I care less about the total time, but I am happy that in week 7 when I can try transitioning to the fastest possible tubing, for my volume that will mean going down to 2h15-2h30min infusion times (depending on whether I am using 5 or 4 sites) as opposed to the 3h30-3h50min infusion times (for 5 or 4 sites) that I’ve been doing on the tubing speed I have now. As I mentioned, on top of the infusion time, it takes me about half an hour (sometimes less now without lidocaine) to open and prep everything and insert and tape all the sites. It also takes me 15-20 minutes to take everything out, because I am trying to go slow and put pressure on each site to minimize bleeding and lumps before placing bandaids, so 5 sites times 2-3 minutes of removal means 15 minutes of removal, minimum. (People who don’t typically have bleeding/bruises/lumps maybe can do this faster than I do.) All in all, right now it’s a 4.5 hour ish process for me, but in a few weeks it should go down to 3-3.5 hours overall and feel more manageable. Again, that’s because it takes time to transition down in the number of needles and transition up in tubing speed.

But for the first month or so, I’m spending about 1.5x time total than what I would be spending (including drive time) for an IVIG session every two weeks. But starting week 7, I will go down to matching the time it would take to do an IVIG session every two weeks versus ScIG every week. For me, timing wasn’t a big factor, and again, for most people with lower volumes etc. this math will probably work out better in their favor for ScIG being faster/less time than IVIG, depending on volume and regimen, etc.

The verdict of ScIG versus IVIG after 6 weeks of ScIG – and is it worth it?

I was lucky (in a sense, after being unlucky by getting whatever disease this is) that ScIG clearly works for me. I started to feel/notice a difference within the end of the first 7 days from my infusion, and it’s continued to improve things from there. Unlike IVIG (see above), I’m not experiencing a “tail off”. I was a little nervous that maybe I was just getting a first week or two “boost”, but I’m over 6 weeks in and still seeing the sustained improvement. Hooray. That made it easier to push through the first few weeks of discomfort and the learning curve of figuring out how to do ScIG, because it is clearly working for me much better than IVIG did (even on a two week cadence!!), it’s getting easier to do over time, and I’m figuring out how to optimize my site placement so it’s more comfortable. Hooray, hooray, hooray. Also, I don’t have to take as much Tylenol throughout the week like I did on IVIG to prevent or manage headaches. I still take “pre-med” doses of Tylenol (to avoid a headache) and Benadryl (to help limit allergic reactions, although I could probably go without this since I’ve never had an allergic reaction) but most weeks don’t find myself taking Tylenol later in the week anymore like I did post-IVIG.

I am still apprehensive about long term site management but hopeful that getting down to only using 4 needles will be manageable with the volume per site and being able to rotate areas of my body that get the infusion each week. There’s a chance my disease will progress and this will no longer work. But there’s also a chance that for me, ScIG will continue suppressing my disease. The mechanism of administration results in lower amplitude difference between the ‘peak’ and ‘trough’ levels of IG, because it is slow to absorb (because it takes a while to go from pancakes into systemic absorption) and then get used by the body. That’s very different from a big bolus/dose on a single day of IVIG which gives you 100% of the dose within hours, into your bloodstream via an IV. That’s a big peak and a fast tail down to lower troughs, versus a medium ‘steady state’ on ScIG. There is also a possibility for me that I may be able to titrate down (e.g. decrease the volume) and use less, which means smaller pancakes. This won’t be a fast experiment and I won’t start testing titration strategies until 2-3 months of steady dosing on my starter dose. But it’s possible I don’t need this much, and also it is easier to test lower doses on ScIG (where I can just infuse less) without having to re-go through prior authorization and change doctor’s orders via the insurance company in order to do this. We can just…do it ourselves. That’s the whole point of ScIG and also makes titration a lot easier than IVIG.

Tips and tricks for those on ScIG

Everyone probably has different ways of doing ScIG and probably has different advice. But I wanted to share some of the things I wish I knew or figured out sooner or things that help smooth the process.

1. Lidocaine cream can be helpful, but not necessary. If you find the timing/taping/waiting/wiping/etc. process annoying, use one of your sites on a spot where you didn’t lidocaine (don’t forget to cleanse it, though) and try it at least once. If you don’t mind it, then you can consider skipping the lidocaine cream process next time and see if you prefer doing it with or without. You can always swap back to it, but if you’re like me and find the benefit minimal and the process burdensome, it is an option to cut back on some of the steps for infusing. And save time.
2. Cut a piece of cardboard (or something) with slits on the side so you can unwind your site tubing and put one per slot so it is easier to ‘dry’ prime (priming so that the IG gets close to the end but doesn’t actually end up in the needle: this cuts down on skin reactions) and also easier to grab one site at a time as you are inserting. I have a piece of cardboard I cut and keep in my bag of supplies along with the pump that I use every time.
3. Spread out your sites and watch where your fluid depots go and whether there’s any relationship to discomfort during or after your infusion and the tissue you’re infusing in. Areas where I’ve infused more recently or had pancake (fluid depot) edges touching tend to be more sensitive during and after. Areas that are very lean/very muscle-y tend to result in it being more of a hill/dome than a flat pancake, with less spread outward but the bigger bump can be more uncomfortable for me.
4. If you can, make notes of where you infused. You can draw on a piece of paper and use numbers (e.g. weeks) or symbols (e.g. x’s and triangles and boxes and stars) to track where you did sites. But per above, it’s not just about where the needle went in – it may also be that you want to think about how big the pancake was. I finally realized that each week marking down what I just infused and putting hypothetical sites marked for the next week was helpful, both in terms of making sure I was thinking about the current infusion pancake and staying far away from it, which was easier to do when the pancakes are visible as opposed to a week later right before I infuse. I actually found I most prefer a powerpoint slide where I have circles showing the pancakes, and numbers in the center representing the week, to be able to see how I’m using my real estate over time. I can also mark lumps/bruises that I want to avoid for longer than a one week gap, and this will also help me see if I have a trend of any problems and if they’re location specific or more general.
5. Get comfortable for your infusion time, however that looks for you. Maybe that’s finding a way to sit with a laptop tray up off your lap so you can work while you infuse. Maybe that’s being like me and finding it easier to do in the evening when you can lay down and watch TV or read or hang out with family. Don’t feel like you have to do it the way anyone else does or even the way you used to do it. I figured out that I like to have a heating pad on low that I can place over my lower legs or later push down near my feet, which is both for staying warm and cozy but also as a sensory distraction at the start of the infusion.
6. Take your time applying the tape over your needle sites. The first week I was anxious (at the ambulatory center) and clumsy (because my hand muscles were worn out) and my tape job was a little sloppy. Because of that, and the site placement, as the fluid depot grew one of the wings was up away from the skin, and I eventually had a little leakage (not all of the IG was going under the skin). Argh. It was a waste of IG and risked my skin getting irritated at/around the needle site because of the IG leaking. Luckily, it didn’t irritate my skin, but now I go as slow as I need to and take my time placing the tape to fully cover the wings. If I have a wing ever so slightly at the edge of the tape, I peel off the number strip of tape on the end (a bonus piece of tape you can ignore, or use as an extra piece) to make sure it’s fully covered and taped down on the ends. (Or you can use another piece of tape if needed). But ever since I started focusing on a better tape job, nothing has leaked (and after 29 sites, having only one ever leak the very first time is a pretty good rate of success!).
7. Use the infusion pump guide or the online calculator to see how long 1 cartridge takes to infuse. Put in the volume of one cartridge (not your full dose) and the correct size gauge and number of needles (e.g. 24G or 26G, 4 or 6 or whatever number of sites you are using), then look at the “average time” to infuse. That usually is a good estimate of how long it will take the cartridge to run. Since my mechanical pump doesn’t tell you when it’s done, you have to watch and estimate when it’s done. The best method I’ve found for doing this is starting the stopwatch on my phone every time I turn the infusion pump on. Then I can track how long it’s been and around the time I’m expecting it to finish, watch the pump and see. Sometimes it’s a little faster or slower, but it’s about right. This is useful to do if you’re watching TV or reading or working or not staring at the pump, that way you don’t waste time not infusing. I ended up making a spreadsheet that shows the number of sites and how long a cartridge takes for each of those: that way as I change from 6 to 5 to 4 needles – and change tubing speed – I can track how long it takes overall to infuse (so I can plan my schedule) and watch as I go to make sure I don’t lose 10 minutes in the middle where I’m not infusing because one cartridge is done and needs to be swapped for the next. Like during IVIG, I don’t like the uncertainty of not knowing how long an infusion will take and having to pay attention during to cartridge changes timing (because I want to optimize and minimize downtime but also not have to stare at it and babysit it), so a spreadsheet helps overall and running the stopwatch during helps track each cartridge.
8. Don’t be afraid to ask for help. Or rather: don’t be shy about asking for an extra pair of hands to chip in where it’s convenient. I found it less overwhelming to ask my husband to help, even though I don’t need or want him to do a lot. This is partly because I wanted him to be familiar with the supplies and process and also because it made it feel less overwhelming and reassuring the first few times. I mostly have him help at the start and at the end. I have him open the needle sites tubing and pull off the paper and unwind the tubing lines. I then get a cartridge ready to connect and together we prime the tubing. Then I do everything else myself, but after the prep part he clears away the pile of trash and at the end after I have removed and clipped all the needle ends into a mini tupperware, he takes that and deposits them in the bigger sharps container and also throws away the rest of the trash. Could I do all that? Yeah, but I don’t have to, and it’s nice to not have to do “it all”.

If you have any other tips to share with others (or me!), please do comment below to share them.

How to help someone on ScIG

If you’re reading this because someone you know or love is considering or starting on ScIG – thanks for caring. You can be a big help just by understanding what is going on and listening to us vent or share our concerns about the process or how hard it is. Because, while it is beneficial (otherwise we wouldn’t keep doing it), it is hard. It’s hard to insert needles (sometimes that’s a big mental blocker) and infuse liquid into the skin, knowing that it will sometimes hurt and often be uncomfortable. And the discomfort can last for hours to days. Obviously, you should ask the person doing ScIG what would be helpful before, during, and after.

Here are some areas you can ask whether it would be helpful/not or if they would prefer you to do (but you’re not limited to this list!):

• For mail order shipments, you have to sign for the box which means someone has to be at the address. Offer to help cover part of the day when the shipment might arrive, so the person doesn’t have to lose an entire day to watch for the shipment and sign for it.
• Offer to help sort supplies once they arrive: checking that everything that was supposed to come did come in the box, and organizing into weekly bags/boxes to make it easier each week to grab and go.
• Ask if they want help figuring out an easy way to record their infusion sites, if they haven’t figured out a good method for them. (Could be using an app, a hand written list, a hand drawn picture, a spreadsheet, a digital picture e.g. like my powerpoint)
• Ask what you can do to prepare for/during ScIG. For example, offer to carry in their supplies to where they want to set up and offer to wash your hands, lay out the sterile drape, and open supply bags, etc. I prefer to do my own needle insertions but it’s nice to have my husband help open the tubing bags and unwind the sites and lay them out (into my slotted cardboard), plus help prime so we have two sets of eyes making sure we ‘dry prime’. Offer to come take away a pile of trash after they do the insertions, so they have less ‘stuff’ around.
• You could also offer to do the needle insertions, if you’re comfortable doing that and if they are comfortable/prefer someone else to do that! You can also offer to stay around – or be out of the way – when they start or during the infusion, depending on their preference. I like to have a quiet room to myself when I put the needles in, but the first few infusions I wanted my husband to come back in when I was starting (mostly because the noise of starting the mechanical infusion pump was so noisy and stressful until I got used to it), and found it nice to have him rub my feet as it started infusing, as a sensory distraction so it wasn’t just the infusion in my thighs feeling at the time I started infusing.
• Because my infusions take a long time, he’ll also bring a chair in and come hang out, eat dinner with me, or putter on his phone so I don’t feel isolated from the house. (He also plays defense with the cats, who LOVE to lay on me when I’m laying down, but isn’t something I want during infusions!) There’s probably a bunch of “small” things like this that are unique to your person and your house and the situation as to what they find helpful or find not having to deal with to be a nice change from having to do it themselves. Offer a few things if you think of them, but say yes to the ones they ask for if you can – it does make the experience a lot nicer! Even if it’s something you don’t think you would care about – it doesn’t matter, it’s what they care about and what they would find helpful.
• Also ask for the after process. This starts with cleanup – my husband carries away the last pile of trash and also takes my mini sharps container that I find it easiest to use (when cutting off the ends of the needle sites) and putting the needle sites into the big sharps container, as well as taking the leftover supplies and pump bag back to the supply stash.
• Be aware that the infusion sites will be sensitive for a day or two: for us, that means being careful when my husband gets in the bed not to roll over and into an area where I just infused on the side of my leg, or avoiding my infusion area if he reaches over to give me a hug or comforting squeeze. I’m really sensitive the first ~24 hours and then a little less cautious but still sensitive a day or two after that, then back to normal. Some people may have longer or shorter timelines for when they want to be careful around the areas they just infused.
• Overall – also be willing (and ask) to listen to any frustration, or any type of emotion people have. It’s a lot to deal with whatever disease or condition is going on that necessitates the ScIG, and then ScIG itself is painful or uncomfortable or just overwhelming and annoying to have to do on top of that. It can take a while to get comfortable with the process of doing ScIG, although it does get easier over time and you and they will find ways for it to feel easier and integrated into your life and find what works well. But, that takes time, so be patient with them and each other as everyone figures it out.

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ScIG works for me (in a possibly very unique situation) better than IVIG does, and helps confirm that my disease is likely autoimmune related since it is responding to IG therapy, even though it’s still technically undiagnosed/doesn’t have a name (and no, isn’t one of the conditions that IG is usually used for). I am thrilled to finally be feeling somewhat better even though ScIG is not a cure but a partial bandaid (for me). A really expensive bandaid. But ScIG is a more flexible bandaid that I can do on my schedule and have control over and without having to hassle with other people’s schedules or the variety of administration approaches that comes from a rotating cast of infusion nurses at the ambulatory infusion center. And it’s cheaper than IV. But, we’ll see how long this is sustainable in terms of being able to manage the real estate that it requires to be subcutaneous. Keep your fingers crossed, please, that I can keep doing it as long as it’s working for me.

And if you’re looking into ScIG for yourself and have any questions, feel free to drop them below: I’m happy to answer questions if there’s anything about the experience you’re wondering about.