Lessons Learned from IVIG

When I was first diagnosed with myasthenia gravis (MG) in 2015, I was extremely underwhelmed by the number of treatment options. Somehow I was also extremely overwhelmed with the idea of each option; especially the side effects.

None of the options seemed like an easy way out; from immunosuppressants, surgery, and blood type infusions. I was completely terrified. However, none of the options scared me as much as IVIG.

What is IVIG?

IVIG stands for immunoglobulin (the part of the blood you are receiving from donors) and IV stands for the way it’s administered.

My neurologist at the time explained that this treatment is typically only recommended in situations of exacerbations, an MG crisis, or when you’ve exhausted all of the other treatment options and nothing else seems to be working.

I was told that typically your first infusion starts in the hospital so they can monitor your reaction or because you’ve been admitted for one of the above circumstances. The hospital stay could be anywhere from 3-7 days but after that, it could easily be administered in a clinic, doctor’s office or even at home.

Considering the side effects

Some of the side effects might include fatigue, headaches, or low back pain. Those were most common but of course, there is always the risk of more serious reactions like aseptic meningitis or blood clots although these are rare.^1,2

All of that considered, I secretly hoped that I’d never get to a place where IVIG was an option for me. Instead I opted for Mestinon a thymectomy with a hopeful and optimistic attitude.

Fast forward to just a couple of weeks after my thymectomy and I began tanking pretty hard. The surgery had left me in a fairly bad place with my respiratory muscles and I just wasn’t able to breathe.

After a visit to the ER, I was admitted to the ICU for a round of emergency IVIG. That hospital visit was such an eye opening experience for me. I learned the hard way what to do and what not to do when being treated with IVIG.

What I wish I knew beforehand

For starters, I wasn’t very hydrated when I went into the ER due to swallowing issues from MG. Despite that, I wasn’t given any IV fluids prior to my infusion. Dehydration is a huge no-no with IVIG and I wish I had known that before.¹

On top of the dehydration, the second most important thing to consider for me is the rate at which the immunoglobulin is infused. They infused me over a 2 hour period which in hindsight was incredibly quick, especially for my first time. Some people might tolerate a quicker infusion but it’s super important to go slow at first to gauge your reaction.^1,2

The third and final thing that I find most important is pre-meds. The most common are typically pain-relieving medications such as Tylenol. I’ve heard of anti-nausea medication and steroids being used as well. I was not given any pre-medications as the third and final no-no.¹

Aseptic meningitis

Knowing what I know now, it came as no surprise that within 24 hours from that first infusion, I ended up with the worst headache of my life, a fever, vomiting, and chills. The telltale sign was that I could not even move my neck or head an inch in either direction which confirmed my diagnosis of aseptic meningitis.

They ended up halting my treatment for almost 48 hours, which was all it took for the aseptic meningitis to resolve. I decided with the guidance of my neurologist to pick up where we left off and finish the full treatment. This time, I was given IV fluids and Benadryl prior.

Although I didn’t feel great, I didn’t get aseptic meningitis again. Once the 5 days were complete, my breathing significantly improved and I was released from the hospital.

Maintenance therapy

For the next year, my health was maintained fairly well on prednisone and Mestinon alone. However, the prednisone began to cause some really awful symptoms like osteoporosis and cataracts.

In addition, I developed cervical cancer cells that my doctor agreed was a result of my suppressed immune system. Both my neurologist and gynecologist agreed that I needed to taper off prednisone as soon as possible.

The only obstacle was finding another treatment that wouldn’t be an immunosuppressant. It was back to the option of IVIG. This time as a maintenance therapy. I didn’t even know that this could be an option.

Luckily, my insurance approved at home infusions and I gave IVIG another shot. It took almost a year to find the right dosage, the right amount of days that my body could tolerate it, and the best infusion rate. Despite that trial and error period, it was the best decision for me.

It gave me my life back

It gave me my life back. I had to go through a huge learning curve to get to the point where I was symptom free and side effect free too.

I was diagnosed with aseptic meningitis for a second time after my neurologist increased my dose from 2 to 3 days and when a nurse also increased my infusion rate.

It may sound silly having gone through that, not once but twice, and still deciding to continue. Once we figured out what worked and what didn’t, I was so relieved that I didn’t give up on it though because it improved my health so much these last 5 years.

Lessons learned

The things I wish someone would have told me when I was beginning my MG journey and certainly prior to deciding on a treatment plan are:¹

1. IVIG can be used as a maintenance therapy; it’s not just for emergency cases and in my experience, it really isn’t that scary.
2. You must hydrate and then hydrate some more; the day before, the day of, and the day after your infusion.
3. The rate matters. The slower it is infused, the less likely you will be to have side effects.

Being an MG warrior means you are also an MG snowflake; none of us are exactly alike. What worked for me might not work for you. I have found that the things mentioned above are crucial for me in order to have a chance at IVIG being successful.

I’m so glad that I stuck with it and certainly hope that the lessons I learned can help others who might be considering or who might need IVIG in the future.