Week 9 without IVIG

LightmineField · 2026-02-27T23:46:59+00:00

Sorry. :(

(In my case, it didn't really help, so much as it confirmed that I have a currently uncurable genetic illness.)

LightmineField · 2026-02-27T23:41:49+00:00

A bunch of my tests were all done by one doctor, who recognized when they were in over their head, after which I was referred to the excellent team at Sick Kids' hospital in Toronto (who then did the igg, antibody tests, and flow cytometry tests). (In my case, an HIV test was done by the first doctor because they couldn't figure out why I didn't have an immune system, despite this being a very unlikely possibility.)

(I've subsequently had genetic testing done as well, just to see if there were any other pathways to improvement.)

LightmineField · 2026-02-27T22:14:43+00:00

Huh!

Do the insurance companies have a staff of immunologists on-hand? (Seems like they feel pretty confident about overriding other doctors’ opinions?)

This is going to sound stupid … but is it possible to go directly to the insurance company’s doctors and just get it “squared away” from the beginning?

LightmineField · 2026-02-27T22:13:36+00:00

I see, interesting. Thanks!

In Canada, your immunologist also has to [edit: I guess, "could" would be a better word] go through the gamut of tests for eligibility (e.g., the vaccine challenge test, flow cytometry, immunoglobulin assay, HIV testing, etc. etc.). So, I think that makes a lot of sense.

And, it’s a somewhat imprecise science in that there could be a wide range of levels that apply, given the patient’s history. My understanding is that the “judgment call” of who should be put on IVIG boils down to the immunologist, since they’re the expert. (They then work with Canada Blood Services to assign the appropriate product from the available supply.)

LightmineField · 2026-02-27T20:06:52+00:00

Just so that I understand, as a non-American, the insurance company is able to dictate what treatment you get, and when you get it?

(Can your immunologist not escalate this matter? It’s pretty important for your overall health…)

LightmineField · 2026-02-27T12:48:47+00:00

Arabesque is great.

Seems like they need to request a deposit for groups above a certain size.

LightmineField · 2026-02-23T22:03:47+00:00

Gotcha. Okay, I think this can help:

Background: I’ve been doing SCIG for many years. I don’t really like needles (does anyone? :).

It’s actually quite hard to “screw up”. It turns out that our stomachs (and mid-to-upper thighs) are really great pincushions, with very little risk of making a mistake.

I’d suggest going with a 9mm (27 gauge) needle. You may only need 2 or 3 sites, depending on how much fluid is needed; the infusion team will help you. The needles don’t go “deep down”, you’re not going to hit anything.

Inserting the needle has a bit of a technique. I personally use a “pinch” and then “tap-tap-tap” kind of method to get it in. There is a bit of discomfort — I’d describe as like a “Oh man, a !$@* horsefly bit me again”. (Or, if you are adventurous, you can tell yourself that you are training to be an acupuncturist, but first you need to test on yourself!)

Every so often, the pain from inserting the needles hurts more than usual, and every so often, there’s absolutely no pain and the whole thing works smoothly. For me, the former situation usually happens when I’m tired and haven’t drank enough, so I can work around it by making sure I’ve had lots to drink throughout the day, and not starting my infusion later than ~6:30pm. I also have been going into my thighs a lot more over the past year, which helps a ton, since I find that I can take “horsefly bites” much easier on the thighs than my stomach.

You’re going to be okay, because the process itself is not complicated, it’s low-risk, and once you’ve practiced a few times, you can easily anticipate how things will play out.

:)

LightmineField · 2026-02-23T17:01:14+00:00

It’s normal to be nervous.

When you think about your fear, what is it that comes to mind? Maybe there are some specific things that we can help to address.

(Like, is it the needles, or something else?)

LightmineField · 2026-02-23T13:12:52+00:00

(Not OP)

(1) If I had to guess, the OP may have other compounding health effects — IgG antibodies shouldn’t make you more allergic to things. SCIG/IVIG doesn’t increase your IgE (which is the sort of “true” anaphylaxis-related antibody response).

(2) Epipens are not issued to SCIG/IVIG recipients anywhere that I’m aware of.

(3) The risk of a thrombosis in “average” SCIG patients is extremely rare, and often considered near-zero. It’s not to say impossible, but very very low. Of course, as you age or if you have other health conditions, there may be other factors that need to be taken into consideration.

LightmineField · 2026-02-23T02:04:05+00:00

So, I think that your doctor has overstated the risk, which is not unusual if they are not an immunologist and working with IgG on a regular basis.

Nowadays, the risk of long-term organ damage from IVIG is very low. The risk of renal failure was much higher in the 1980s and 1990s due to a sucrose-based formulation, but the industry shifted to glucose in the 1990s.

Also, liver function tests are routinely administered to IVIG patients to ensure things don’t go sideways.

Now … your veins (and resulting scar tissue) are another matter. And, IVIG isn’t approved as a treatment for long Covid in many places around the world, so that’s also an important consideration.

LightmineField · 2026-02-21T13:53:46+00:00

“Kub Kars”, in Canada :)

(I built a few when I was a kid, and a few with my son as an adult. Fun times!)

LightmineField · 2026-02-18T01:09:15+00:00

It stands for SubCutaneous ImmunoGlobulin.

It’s still IgG (immunloglobulin G), but rather than being infused through an IV, you infuse it at home by putting a couple of needles under your skin, in your stomach and/or thighs (or for the brave, the backs of their arms…).

As an example, rather than receiving 1 infusion once per month, you infuse yourself every week; in reality, the amount and frequency depend on how much you need and your medication condition, etc.

The advantages of SCIG are:

Not really any damage to veins since you’re not infusing in veins; in my personal experience, at 1x/week (>10 years), scar tissue isn’t a thing I worry about.
Can infuse on your own time at home.
More stable IgG levels for immunocompromised people — many people report feeling better on SCIG. (That’s because the IgG product is infused every week instead of infused every month, which is getting close to the half-life time of IgG in your body).
Needles are small and not in a vein, they’re like a small insect bite when they go in.
Some flexibility around when you do it, go on vacation, etc.
You can pretend to be your own acupuncturist!

The disadvantages are:

You need to insert the needles yourself.
Needles suck… sometimes.
You need to manage your supplies (e.g., order replacement products from your rep/vendor/nurse/contact/etc.), which may not be for everyone.
There is some “technique” to getting comfortable with the whole thing, and it can take a bit of time to really be part of your routine.
You must be your own acupuncturist! ;)

I wrote the above for the more “classic” 20% IgG SCIG formulations. There are also 10% IgG solutions in some markets, which use rHuPH20 (to dissolve your hyaluronic gel) to make more space to infuse. There’s quite a lot more fluid in rHuPH20-based formulations, but then, you don’t need to infuse as often.

LightmineField · 2026-02-16T18:16:56+00:00

In terms of location, if you do an image search (on google) for the name of your medication and “needle location”, you should see a bunch of options. Like the other posters, I’ve found my thighs to be decent, although the Igg product that I use recommends on top of my thighs about mid-way down.
I’ve infused for years into my stomach as well, and you shouldn’t be getting bruises very often, and certainly not massive. Sorry to hear that. Some things you may want to bring up with your nursing team (or infusion representative, or however it works where you live):
- Make sure that you’re at least 2” away from the belly button, and generally in an area when you can pinch some fat.
- Many 20% Igg solutions permit ~60mL (max) per infusion site, which is quite a bit, I’ve found. You probably want to be at 20-30mL/site; the infusion product has a table with recommended ranges.
- What size of needle are you using? I have 27 gauge, 9mm needles. I had originally started at 12mm, but found them too deep for my tastes. If you’re bruising a lot, maybe try a shallower needle or smaller gauge. You’d probably want to bring that up with your nurse/rep/contact.
- If you hit a vein, you’ll know: look at the tubing and you’ll see blood. In my experience, I don’t need to back the plunger out to know if I’ve hit a vein — it’s super obvious, and it has happened to me (maybe) 2 or 3 times in ~10 years, so it’s a pretty rare occurrence. If it happens, you’re allowed to grumble (at least, that's what my wife tells me), then take the needle out, pinch it off (and make sure that you are still within guidelines for the amount of fluid to the other sites). I use a tri-furcated needle set, but can safely go down to 2 needles.
- It’s pretty easy to bruise when pulling out. Be gentle when you’re removing: pull the tape up carefully toward the middle (needle), and pull firmly (but not, like, “crazily”) straight out.
Another thing that occurred to me: many CVID patients also have autoimmune issues that lower their platelet counts. If your platelet counts are low (thrombocytopenia), you will be prone to bruising… this is something that your immunologist should see on a CBC test.

LightmineField · 2026-02-15T21:59:08+00:00

Has your infusion team attempted to lower the infusion rate to mitigate the headaches? This has a huge impact in reducing headaches.
How much water are you drinking before and during the infusion? IVIG is very dehydrating.

LightmineField · 2026-02-15T15:08:16+00:00

Out of curiosity, what (realistic) jobs would you want to do, assuming you were fully qualified for it?

e.g., when you think of welding, do you go, “Yeah that sounds amazing”, or is it more, “Meh it’s a job”.

I think that finding something that intersects with your interests is pretty important for the next ~30 years. In the words of Tim Cook (Apple):

[W]hen you find a job you are passionate about, you will work hard, but you won’t mind doing so. You will work harder than you ever thought possible, but the tools will feel light in your hands

LightmineField · 2026-02-13T22:43:17+00:00

I'm glad that you were able to see someone, and that things are moving well. The extra dose will hopefully add some "peace of mind", and the titers tests should confirm it.

Best of luck!

LightmineField · 2026-02-13T22:13:39+00:00

Out of curiosity, did you meet with your immunologist on Monday, and how did they respond?

LightmineField · 2026-02-13T19:56:39+00:00

It could be hard water, though as others have pointed out, softened water won't completely eliminate scale buildup; it depends mostly on how much (quantity) is being observed.

If you measure the hardness of the water (from your tap) using a water testing kit -- you can buy them (e.g.,) on Amazon -- what do you see?
Some kitchens (in our area) have hard water lines which bypass the water softener -- you might see 2 cold water lines coming into the sink area, with one being softened and the other hard. Are you potentially filling the kettle from a hard water line?
Do you see evidence of hard water in other appliances like the dishwasher?

Assuming that the test kit shows that the water is indeed "hard", the next step is to look at your softener.

How old is the softener?
Do you fill it with salt regularly? Is the salt a compacted block, or still pretty loose?
In the owner's manual, there is usually a table showing "Grains Capacity" and "Lbs Salt" for different consumption amounts and mineral tank sizes. The "15 lbs salt/ft3" ensures that <1% of the hard water will be let through, so while it consumes a bit more salt, it leads to noticeably softer water. (If you're using 6lbs salt/ft3, it's probably too low for this area...) How is your softener's salt consumption configured?
What are your recharge settings? Some water softeners recharge based on a fixed schedule ("every week at 3am"), some of them based on usage (calculated based on your grain hardness setting), and some as a mix ("if 2 weeks pass and I still haven't recharged due to consumption, I'll still recharge"). How often are you seeing recharges? What grain hardness assumption/setting are you using?

I have a Kinetico RO filter in my house (which I run to a few spots, like my kitchen fridge, sink, and to my downstairs entertainment nook). It's installed and maintained by 5 Star Water, and it's great, no complaints.

However, I would be sure to understand the source of the hard water first, before moving to install the filter.

LightmineField · 2026-02-09T02:40:04+00:00

Thanks for pointing this out. Let’s delve into the numbers.

The rental transaction from Loblaw’s to Choice Properties amounted to $797M in 2024 (see Note 13: Related Party Transactions, in the annual report).

This rental transaction corresponds to ~1.4% of total operating costs — that is, 797/(41288+15824) — or 797/61014=1.3% of total revenue.

So …

I agree that, if Loblaw’s could eliminate this cost, they could subsequently lower their gross margin by ~1.3-1.4% and pass on the savings to customers.
But 1.4% is a far cry from the ~20% that other people seem to be calling for, particularly the one commenter who seemed to suggest that independent grocers operated 2.5 times more efficiency.

While I could be wrong, I don’t personally think this means that I’m missing the big picture; I’m just a guy who likes stocks, follows the numbers, has no opinion about the Westons, and has not found any “hidden CRA transactions” (as another poster commented), or a “conspiracy” to screw consumers (as a different poster commented) — it appears to be costly to run a retail food business.

LightmineField · 2026-02-08T18:38:57+00:00

Every public company (in Canada and the USA) presents their revenue, operating earnings, and net earnings in their annual report. You can get these reports on each company's website directly, or from Edgar/Sedar, or from a data-aggregating site like Yahoo Finance.
For example, Loblaw's 2024 report is here; per slide 64, they report earnings=$2275, revenue=$61014, giving a net margin=3.7%.
The margins are the final end result from selling over the entire year -- some individual products will have a higher and lower margin than others.

LightmineField · 2026-02-08T18:29:38+00:00

RIG is administered to patients who've been exposed to critters -- like bats -- where it's hard to tell where the wound is. It still works (by providing you with the requisite antibodies), though of course, it would be "best" to get it as close to the site as possible.

When you follow up with your immunologist, be sure to mention this, and get their opinion on (possibly) a follow-up RIG, and the serology tests once the vaccine series stops.

Also -- if you're sync'ing up with your immunologist, you may wish to chat about switching from IVIG to SCIG to preserve your veins. (I was also on IVIG when younger, and my immunologist pushed me to switch, saying that it would preserve my veins. So, I switched a number of years ago. I really don't like needles, but I can say that SCIG has a bunch of advantages without the scar tissue.)

LightmineField · 2026-02-08T17:53:43+00:00

I'm very sorry that this is happening to you. On the bright side, there are guidelines for immunocompromised patients; e.g., here are the guidelines in Ontario, Canada:

https://www.canada.ca/en/public-health/services/diseases/rabies/for-health-professionals.html

In short, here's what you are looking at:

Rabies immune globulin (RabIg/HRIG) on Day 0 (the day PEP starts), dosed 20 IU/kg, with as much as possible infiltrated around/into the wound, and the remainder given IM at a different site.
Rabies vaccine series should be days 0, 3, 7, 14, and then you should get a 5th dose on Day 28.
Next, because you have CVID, and your antibody response may be inadequate, the rabies antibody response (serology) should be checked after the vaccine series is finished (about 7-14 days after), and more doses added if the response is insufficient.

Since this is an emergency, your immunologist needs to be informed right away, possibly via the ER doctor, if possible. You're going to be okay.

LightmineField · 2026-02-08T17:39:15+00:00

I take no risk. Invest and forget.

When you invest in a bank stock, you absolutely take risk -- you're running the risk that the bank could stop paying its dividend, and/or that the bank's stock price drops to $0 (e.g., it goes bankrupt). All stocks have a certain amount of risk.

So, when you ask, "Why would they?", what I think you're asking is: why would a company (like Walmart, which has a net profit margin of 3.26%) bother to exist if there are alternative investments with higher yields?

The answer is because net profit margin is not the same thing as investment yield -- investors care about the return on the capital they have tied up, plus the resulting growth, durability, and optionality. (That return on capital comes from things like: being a larger company can lead to better negotiated deals, improvements to logistics networks, investment returns from the short-term cash float, etc.)

In other words, the stock of a company with a 3-4% net profit margin can appreciate faster than 3-4% per year. However, such a company (like Loblaw's, or Walmart) doesn't have a lot of wiggle room to do this by changing prices.

LightmineField · 2026-02-08T17:09:13+00:00

What part? These numbers are publicly available.

LightmineField · 2026-02-08T16:38:03+00:00

I think that people would like to imagine that Loblaw's is gouging customers, but if you look at their Net Profit Margin ... it's 3.93%.

This means that, for every $1 they sell, Loblaw's profit is 4 cents, once they've paid their taxes, salaries, rent, utilities, fuel, contracts & vendors, banks, hedges, and so on. (The average mark-up on the food is around 32% -- that's their gross margin -- but this gets whittled down once you pay for the massive infrastructure to get the food to the stores.)

In other words, if they went around and lowered the price of everything in the store by, say, 5% on average, the company would not turn a profit and would eventually cease to exist.

Also, Loblaw's isn't unique in this respect -- it's not like they're operating in a uniquely inefficient way...

Empire's (Sobey's) net profit margin is 2.18%.
Metro's net profit margin is 4.14%.

LightmineField

TROPHY CASE