Starting IVIG (intravenous immunoglobulin) tomorrow!

This could be a game changer

Breaking news here at LC and ME: my health insurance approved me for IVIG infusions and I start tomorrow!

What is an IVIG infusion and when might someone need one?

From Healthline’s website:

IVIG is a therapy used to treat antibody deficiencies related to a variety of inflammatory and immune-mediated diseases. It’s made from antibodies called immunoglobulins, which your immune system typically makes to help fight off infections.

The immunoglobulins in IVIG infusions are derived from thousands of healthy blood plasma donations. These infusions are also purified, making the chances of contracting any blood-borne diseases from donors very low.

Perhaps one of the greatest benefits of IVIG is that, unlike immunosuppressants, these infusions don’t increase your risk of infection.

The overall goal of IVIG therapy is to help restore a severely weakened immune system.

When you have an immunoglobulin deficiency, your immune system can’t produce enough infection-fighting antibodies. This can make you more vulnerable to infections.

Your doctor may also recommend an IVIG infusion to help reduce inflammation. In autoimmune diseases, this therapy can help prevent your immune system from attacking healthy cells.

My infectious disease doctor suggested this for me based on 3+ years of symptoms that haven’t abated, including fatigue and small fiber neuropathy, and based on certain lab results showing immune deficiency. In April, she tested my pneumococcal antibodies. In May, she administered the pneumonia vaccine, and in early July, she retested my pneumococcal antibodies to see if my body responded appropriately to the vaccine and produced adequate antibodies. Apparently, I produced some of the pneumococcal antibodies just fine, but others were pretty low. This, along with my previous diagnosis of small fiber neuropathy based on a 2021 skin biopsy, helped me get insurance approval.

Today has been a whirlwind of phone calls and information gathering in preparation for this; I had to make sure that I would be able to afford the co-pays and out of pocket costs even with insurance approval. What started out as many thousands of dollars came down once we realized I am not very far from meeting my out-of-pocket costs for this year (yay, chronic illness?).

There was a nice lady at the infusion center who was a big help to me today. Her name is Gail and she’s from Louisiana and she told me a bonkers story about how when she was little, she and her cousins had to go into the bayou to fetch a runaway horse and there were alligators or maybe crocodiles and one of her cousins didn’t know how to swim but they all made it out just fine. After we were done hooting and hollering, I told her she needs to write a short story about that, or maybe even a book since I’m sure she has more stories she could tell. She was a doll.

Anyway, Gail deals with the insurance and after she made a bunch of calls on my behalf and I thought we were maybe done for the day, she called back and said she remembered after we hung up that the drug manufacturer offers a co-pay assistance program and she's going to hook me up. I hope this means that I won’t have to pay the few thousand to meet my out-of-pocket max, but we’ll see.

Possible side effects

IVIG could eventually lift my fatigue and neuropathy and give me hope for a future that could resemble my past (in some ways; there are patterns and jobs and such that I’m not going back to even if I make a full recovery, all for a future post). It holds promise and that’s exciting.

At the same time, I’d be lying if I said I wasn’t anxious about the possible side effects. Just keeping it real.

Here they are, as described to me by the nurse coordinator today:

• increased risk of stroke; be mindful of blood pressure (mine is routinely low, 90/60, so not a huge concern)

• aseptic meningitis (a rare occurrence), which may include the worst headache of my life (try me), neck stiffness, fever, nausea/vomiting. She calmly informed me to go to my nearest emergency room if this occurs 😟

• temporary headaches and chills during and after infusion

• increased fatigue, joint aches, flu-like symptoms (call them if these last more than a day)

• rash, which might be delayed by days or weeks

Eeeeeeeek.

Here’s hoping for the best.

If you’ve had IVIG infusions or know someone who has, I’d love to hear about any insights, tips, or outcomes.

If this knocks me down this week, Sunday’s post may just be a brief check-in. Either way, I’ll probably write about the experience. In the meantime, please send me good juju and…

Thank you! 💛

**Disclaimer: I am not a licensed medical professional, and you should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.