IVIG vs SCIG

In the beginning I started out on Octagam 10%. 40g. Infusions took forever. Fastest they would let me go was 200mL/h. It was an all day affair. Sitting in the infusion center. Tick tock. 7 hours to get it done. As time progressed I started asking them to up the rate. Finally one day, one of the experienced nurses just did it. I think I made it to 360mL/h. As time went on however, my dose started to increase. At the end of IVIG in 2020, I was at 60g every 4 weeks.

That’s when my body decided to revolt. I did IVIG for quite awhile, but my veins started to give up. What used to take a single stick from an infusion nurse (they know what they are doing), slowly became 3-4 sticks. Veins collapsing, rolling, infiltrating. Friday mornings were not something to look forward to anymore. It wore out its welcome quickly.

COVID

As COVID hit, going out wasn’t a thing anymore. The strict policies they put in place were definitely needed. But the main jist was if you got COVID, you couldn’t get your IVIG. Which the needs of the many outweigh the needs of the few. This, combined with the vein difficulty started the conversation of SCIG. My immunologists PA came in, we talked about all the options. That’s when I told her I just want to do all of this at home. It’s safer, I can get treatment. Just avoid people in general. Fine by me.

There is a few differences between the treatment options. For starters, both products are made from human plasma. But the extraction process is slightly different, as well as the delivery mechanism is a vast difference. Another consideration to make is % by volume. IVIG has a standard 5% or 10%, SCIG however has a broader % by volume depending on the product you use. SCIG tops out at 20%, and there are 3 products to choose from. As the PA sat with me, we went through everything. I wasn’t pushed a certain product, I was shown all the options.

As we started going through the varying products, there was absolutely 1 thing that needed to be apart of doing that specific product. Patient assistance. People don’t realize how much this helps. So let’s break this down. A single dose / session of IVIG is about $15-16k. Depending on your insurance, January is an EXTREMELY painful month.

Why?

Easy. December 31st @ 11:59pm your co-pays / out of pocket resets. It’s stupid, but it’s what the insurance companies do. So your first dose the next calendar year, you have to meet your deductible. Depending on your insurance, pay frequency, and plan, this can be a steep wall. For me luckily it’s only $3,000, however, that’s what you have to pay for the first infusion of the year. Once your deductible is met, then the second part of insurance gets calculated in. Again this varies, but for me it’s 90% / 10%. Insurance covers 90%, you pay 10%. So essentially each infusion after the first is $1,500. The last and final wall you have to financially survive through is out of pocket maximum. Some insurance plans are set to either pay now, or pay later. For me, since 2008, I’ve always chosen pay now.

So if treatment with IVIG is every 4 weeks, I’ll hit out of pocket maximum by the end of march depending on the week(s) things are done. So basically I have to have $7,000 ready to pay for treatment. Every year. For the rest of my life. So what about SCIG? It’s really no different. My specialty pharmacy dispenses 4 weeks at a time. My medication shows up at my doorstep in a huge ass box packed with supplies, vials, and dry ice. But that box costs the same. For the same “period” of treatment.

The only difference there is IVIG is every 4 weeks, SCIG becomes a weekly affair. From an efficacy standpoint, they are the same thing. One goes direct into your blood, the other sits in your skin and is absorbed. The only other factoring thing to pull in is time. IVIG can take up to 8 hours to administer, where SCIG takes 2 hours. Between the two, SCIG is easier.

Why the fuck are you talking about this?

Well. Since 2020, and the switch to SCIG on the top seemed like the right thing to do. Easier to get it, administer it, and no infusion center. No man-bun-Ben to walk into your room with no mask, no gloves. Didn’t wash hands from his previous patient encounter. Dude is a fucking yutz. But as time has progressed, this infection that has literally torn through my face and neck and ear has really started to amp up its game as of late.

You’d of thought that the antibiotics from the hospital and home would have stopped it. It hasn’t. But again, I’m still waiting for the second surgery. We NEED to do source control. I feel the source every day. Little abscesses under my tongue, along my jaw. Inside my mouth along my inner cheeks. Outside of my face following the same pattern. Ear to ear, chin to throat. Yeah. It’s that bad. That’s what I feel every waking moment.

Prior conversations with Dr Sarid have shifted from just refill appointments, to how do we stop this. Since the infection is ramping up, maybe SCIG just isn’t the right thing for me right now. Plus the dosage I’m on, is 144mL of fluid. In my leg. Every week. Think about that. It’s literally almost a 1/3’rd of a bottle of water that I gotta find a place to shove it. It’s not painful, it’s just uncomfortable. On top of that, having a versarate (in line rate controller) stop working sucks. I don’t pay attention to if it’s going. I just start my infusion, and look about 30 minutes later where the syringe is at. Lately I’ve just been getting duds. It’s just a pain in the ass.

So as our conversations are shifting, the talk of going back to IVIG is on the table. It’s been something that I’ve tried to avoid, but at this point, is the only option that will work right now. For me anyways. So first and foremost, infusion center. Fuck that place. Fuck Ben. Yutz. Secondly, current status of my veins. They still suck. They still blow, roll, impossible stick. Which is part of the conversation now. The only solution is a portocath. Currently I have had a picc line since October of last year, but that’s only been for antibiotics. But the nice part is, picc lines are bidirectional. Can use it for labs too. Kinda nice.

As we talked more, Sarids main worry is my inert issue of my retarded B cells. Infection. Ports aren’t naturally occurring devices. Your body will probably try to fight it. Did the interventional radiologist place it correctly. Did they keep it sterile while inserting it. Lots of questions there. Maybe even call them concerns I guess. A port basically serves the same purpose of a picc line / midline, but with 1 amazing benefit. It’s semi-permanent. If no problems arise from getting one placed, it’s there forever. Or until you don’t need it anymore. Picc lines can only be there for 9 months tops, midline’s are less than 2 months. So there’s the options. Pick one. If I go midline/picc, I’ll have to get it replaced occasionally. Yes. They can stop working. They can clot. They can become infected.

So lots of moving parts here. This isn’t easy by any means. So ok. I’ve decided to get a port placed and return to IVIG. This has taken me about 3 months to really mull over the benefits vs risk. But I need to get my body ahead of whatever this fucking infection is. So 2 weeks ago, I spoke with Dr. Kaufmann who is my infectious disease doctor. Currently, she is the one whom “owns” my picc line. The weeks leading up to that appointment, my conversations with Sarid, came to where Sarid wanted the opinion of Kaufmann to hatch my master plan. Thankfully she’s great to work with. And not fucking Dr. Eison. That guy is a fucking turd. He’s the one who called me crazy in 2020. This all could have been stopped had he payed attention.

ANYWAY

So Kaufmann agreed that going to a port would be best. During placement, a dose of vancomycin would be best to catch anything that could potentially cause issues later on down the road. So the plan is this. Trial back to IVIG utilizing the picc line for 2 weeks. If I tolerate the IVIG treatment (which I dont see an issue), then have the port placed and the picc pulled.

Scary

But this is what I’ve gotta do. So it would be 10g of Octagam 10% (I’m assuming we are just gonna put me back on it), for the next 2 weeks. Get port, then return to IVIG full time. As far as dose, and frequency, that’s up in the air. The one thing that’s nice about SCIG is your igG levels say pretty consistent. With IVIG, you get an insane amount of antibodies right away, then it just rolls off over time. The ol rollercoaster. Since IVIG is every 4 weeks, that 3rd fucking week was a doozy. I just felt unplugged. Worn out. Dead. Useless. So perhaps we do 50g every 3 weeks, maybe scoot up the frequency. I’m sure we will have to play the lab game for a bit to dial this in, but if I hard stop everything, I’ll just fall back to an igG of 350, and game over.

With SCIG I’ve been between 1000-1300 (which is where you wanna be). There was those 2 weeks where I had experimented a little bit when my igM jumped to 40 (yes I was fucking shocked), it’s been < 20 every time we have pulled it since 2018. As expected, my igG dropped to 900. Labs all have different numbers, but 700 is the low cut off for igG. So let’s not hover there.

So yesterday I called Sarids office and pulled the trigger. My beta test of trialing down on SCIG essentially was a stupid fucking idea (my own opinion). Yeah. The end goal was to just reduce the amount per infusion, but if this infection isn’t going away with what I’m on now, it really doesn’t matter how much volume, or what %, how often I’m doing will really make that difference. Hopefully with IVIG things will get somewhat better, and more sustainable. IVIG does have anti-inflammatory properties, and that’s what I’ve been dealing with now for a long time. Inflammation. And no, I’m not going to play the double edged sword game of fucking steroids. Hate that shit.

So I guess we will see where this all goes from here. IVIG, surgery, recovery, returning to work, returning to life. Would be the best result I’d want. Yeah I’ll have a port, but I’ll still be here. I’ve lost a lot of things since 2018. To which were necessary to get me to where I am now.

It’s 6am. Woke up to pain at 1am, then 4am. This shit is getting old. Quick. I’m texting Hepworth Monday to see where we are at with surgery. We gotta get this done and over with. I can’t just sit here on short term disability just waiting. I would love to use this time to recover.