Annnd we’re back with another edition of Pills and Potions. We dug in to Mestinon. We deep dove into Prednisone. Now it’s time to drip into IVIg. If you haven’t read the prior posts regarding my myasthenia gravis treatments, you should definitely check them out. But without further ado let’s get into it.
It had been a month since my last appointment with my specialist. I was maxed out on Mestinon (taking 4 60mg pills during the day and a 180 mg pill over night) and taking 60mg of prednisone everyday. Yet my symptoms seemed to be getting progressively worse and I was borderline in crisis. So my specialist introduced IVIg into my regimen.
What is IVIg?
IVIg is the abbreviation for Intravenous Immunoglobulins (much easier to say IVIg). It’s used to treat a variety of infectious or inflammatory diseases, autoimmune disorders and neurological disorders. In patients where normal functioning antibodies seem to be less than plentiful, IVIg replaces lost antibodies or aids in the production of antibodies.
How does it work?
Have you ever been admitted to the hospital for dehydration? They hook you up to an IV and deliver fluids directly into your veins. It’s basically that same principle with IVIg.
IVIg treatments are administered intravenously. There’s nothing for you to do. You just sit there while the machine pumps the meds into your body. The medication is infused slowly. The rate is based on factors like your age and weight. Your nurse may increase your infusion rate as long as you’re handling everything ok.
Cons to IVIg
- The cost: IVIg is mad expensive if you don‘t have health insurance that covers it.
- Getting approved: Some insurance companies give the run around when it comes to approving IVIg. Why? I have no clue. But if you really want it, you and your doctor may have to fight for it.
- Side Effects (during or after receiving infusion):
- Allergic reaction
- Body aches
I was borderline in crisis when I was prescribed IVIg so my initial dose heavy. I had to get infused every single day for 5 days then once every two weeks. In fact, I talked about having to go get infusions during one of the most busy summers of my life.
Within a couple of weeks, my insurance approved my request and I was only required to pay my copay every visit. Over time these visits add up, especially that first week of back to back treatments. I’ve told yall before the cost of being ill is sick. But in comparison to how much I would have had to pay without my insurance, I’ll take it.
On the day of my first treatment I drove to my chosen facility. There were a bunch of locations to select from. I chose one relatively easy to get to. The nurse was very pleasant. She took my vitals (temp, blood pressure, weight etc). Then started setting up the drip.
The infusion room was quiet and a smidge cold. The nurse offered me a blanket and a pillow. I’ve never been to another facility but this place had nice reclining leather seats and tvs mounted displaying talk shows or game shows. There was a couple of other patients there receiving their own treatments for their conditions. We would sometimes talk. Other times I would put in my headphones and simply go to sleep. The nurse would check on me every hour (blood pressure and temperature). If I had to get up to use the bathroom, she’d have to pause and unhook me. So I always tried to hold it.
During my actual infusions I always felt ok. Thanks to Prednisone and all the extra lbs, I was able to have an increased infusion rate. So my first treatment took about 5 hours. But as I continued to receive them the time went down to a little less than 3 hours.
Post infusion I had migraines and nausea. When I spoke to the nurse about it, she advised me to take an allergy med and pain reliever prior to treatment to try to combat it. It helped a little but didn’t stop them.
Thoughts on the drip
I received my last infusion a few days before my thymectomy. For some reason within a few days of receiving my infusions I would always end up in the hospital. My body didn’t take too well to the medication despite the tips I followed from the nurse. The few days of MG symptoms relief I experienced didn’t outweigh the frequent hospital stints so my neurologist and I decided they weren’t doing me much good. However, if you’re body can handle it I would recommend giving IVIg a try because I did experience some MG relief.
~ Stay Drippin