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Experimental Treatment

The course of treatment for this disease is highly individualized. It depends on the severity of symptoms when you were diagnosed and the doctors treating you. Though the disease process is not fully understood, we are lucky these days to know just enough to treat those affected.

By the time the neuroimmunologist saw me in September of 2022, my inflammation had gone rampant. It was like going from a brush fire to a national forest fire — “the kind that makes the news,” as my infusion nurse put it. They suspected Hashimoto’s Encephalitis.

For encephalitis, the first line treatment is corticosteroids. Large dose intravenous (IV) infusions are suggested for those with severe enough symptoms to tamp down massive inflammation that may be targeting the brain.

My doctor prescribed five days of one gram (1,000 mg) of Methylprednisolone, also known as Solu-Medrol. This was a massive dose; they brought in the truck and the fire hose. The steroids were experimental in the sense that they would be the deciding factor in my diagnosis. If my neurological symptoms were resolved with anti-inflammatory corticosteroids, that would be enough to suggest that the cause of my symptoms was brain inflammation.

If you read my previous article “Diagnosis in Focus,” you know that I only made it through four of the five days of my steroid trial. At first, it was as if my body was shutting down, and we feared that we would be just as much in the dark as before. However, on the seventh day from the start of the infusions, the fire started to die down. I could speak and move for the first time in such a long time . . . We aren’t entirely sure why my body had a delayed response to the steroids; perhaps it had to do with the massive amounts of inflammation it was working with. Whatever the reason, the steroids succeeded in putting out the fire in my brain and gave us answers in the process. I was officially diagnosed with steroid-responsive encephalitis.

The “high” lasted four weeks. I was not put on a maintenance dose of oral steroids. I believe my doctor’s thought process was that if we remained on a higher dose of Lamotrigine (an anti-seizure medication) without steroids, we would see how my body responded to the steroids leaving my body and know for sure that it was the steroids that truly brought me out of the fire. Four weeks after discharge, I began to experience symptoms like seizures and speech issues again.

As soon as I relapsed, my doctor put in an order for intravenous immunoglobulin (IVIG). IVIG is a concentration of healthy antibodies from many plasma donors that helps boost the body’s immune response. It also bonds and neutralizes auto-antibodies (the confused immune cells that attack the body rather than foreign invaders) and decreases inflammation. According to patients in my support group, IVIG has been one of the most effective treatments for HE; I was eager to get started.

Unfortunately, although my doctors submitted a rush order, months went by before I received any treatment at all. According to my insurance company , IVIG is considered an experimental treatment due to the fact that encephalitis is rare and much of the pathophysiology is unknown. On that basis, we were denied coverage and forced to go through three appeals. Without insurance, each monthly treatment is $18,000 . . . (Yes, you read that right.)

In the meantime, my neurological function steadily declined again. In December, my doctor finally agreed to put me on a maintenance dose of 40 mg of oral prednisone to contain the fire until IVIG was approved. It did help decrease the amount of episodes and symptoms, but I was still very far from functioning normally.

I wish someone had told us that the first two appeals were going to be denied no matter what. The third appeal was a statement from my doctor stating medical necessity. I needed this treatment to function — to survive. It was not until February, five months after the order was placed, that I was finally approved! Any excess bills not covered by insurance would be covered by company financial assistance — both from the infusion clinic pharmacy and the Octagam Copay Assistance.

I was prescribed 120 grams of Octagam (a brand of IVIG), which is equivalent to about 100 plasma donations. This dose would be administered over five hours each day for two days. An infusion nurse would come to me in my home, and I would carry around a bag with a pump.

The first round went better than expected. I avoided the famous IVIG headache with lots of preemptive hydration and a preventative dose of Tylenol, Benadryl, and steroids. By the end of day two, however, I had become extremely weak, to the point where I could barely move. My nurse said my body was working hard to utilize all the soldiers that just entered my body, so fatigue wasn’t unexpected. Luckily, I recovered quickly over the next couple days.

The second round went better than the first. I was fatigued, but I did not feel overwhelmingly weak. My body was already getting familiar with the outsiders, recognizing them as allies. Episodes became fewer and farther between. Looking back now, I see that I was nowhere close to normal, but it was such an improvement that I couldn’t help looking at it through rose colored glasses.

At this point, I was also becoming all too aware of the side effects of oral steroids. My doctor had been hesitant to put me on maintenance steroids in the first place due to the potential for developing internal side effects like weakened bones, high blood pressure, and diabetes. I had already developed Cushing’s syndrome from the high levels of cortisol in my system. This caused acne, fat deposits in my face, and purple striae marks across my body. Due to fluid retention, I was in a constant state of puffiness and had gained a significant amount of weight in a short amount of time.

I reached out to him about weaning me off the steroids now that I was on IVIG. He said I could go ahead and reduce my prednisone dosage from 40 mg to 30 mg. This was a big jump for my adrenal glands. Two days later, the fatigue set in — something we had expected. I pushed forward and attempted to go to my sister’s wedding. I got cocky, bragging about the drop in steroids. Suddenly though, it became more than just fatigue; it was muscle tension, seizures, difficulty talking, walking, and seeing . . .

Two weeks later I felt like I had recovered, so I went down to 25 mg. Within three days, I started talking funny and jerking my head, among other symptoms. I became very confused and forgetful and developed paraphasia. I began substituting words unintentionally, saying sentences that made no sense. Words would come out of my mouth that I didn’t even know were on my mind. I surprised myself by saying things like, “Cover the skin,” when I meant to say, “Close the blinds.”

I was impatient to be off of them entirely, but my parents and providers convinced me that I had to go back up to 40 mg of steroids. My infusion nurse said this attempt just showed that I wasn’t ready to be on IVIG alone yet, not that I never would be. It took a week for the episodes to stop, and even then I continued to suffer from confusion and occasional speech issues.

Finally, the time came to see my neuroimmunologist again. We discussed my response to IVIG and my attempt to wean off the steroids. Though we were all pleased with my progress, we agreed that I needed a plan to get off the steroids. My doctor decided to put me on CellCept, one of the safest and most efficient immunosuppressive drugs. Our hope was that CellCept would suppress my immune system and inflammation enough to wean off the prednisone (successfully this time). I would start at 500 mg for a week and then go to 1000 mg for the foreseeable future. In three to six weeks, he recommended I start to decrease the prednisone by 2.5 mg per week, pinching my pills.

Today, I have had six IVIG infusions. My nurse has increased my rate and I now get the same dose in 3.5 hours for 2 days. I’m handling it beautifully and may be able to take it in a single, 6.5-hour dose one day.

Since being placed on the CellCept, my function has significantly improved! I went on a couple walks down the street and have been going out in public to restaurants, stores, and family events. I even made a four-hour car trip to see friends, though I wasn’t the one driving, of course.

The slow steroid taper has also been going wonderfully. The main issue that persists is occasional brain fog and an abnormal gait. When I exert myself too much, I slow down and have trouble taking steps forward. I may fall back or have trouble walking in a straight line. Other than that, I appear on the outside to be a normal, functioning human again.

IVIG and CellCept will continue to be my main forms of treatment. Once I am stable on these medications without steroids, we will begin to discuss getting off other medications like Lamotrigine and Sertraline, which may not be necessary now that the root cause of my symptoms has been found and addressed. I even have potential for remission; one day, I may only need rescue infusions of IVIG for relapses. But I’m getting ahead of myself . . .

With these treatments, I am gaining my life back and with that, hope for the future. I dream one day of working as a nurse who brings new levels of empathy to her patients and is dedicated to ensuring their quality of life. I also intend to write a book that goes into depth about my surreal experience with an inflamed brain. In the meantime, I am helping HESA write the updated version of Understanding Hashimoto’s Encephalopathy, an informational book for patients, providers, and caregivers.

This experience may not seem serendipitous, but I make the choice every day to view it that way. As a registered nurse who has finally regained her capacity to write, I am now in the perfect position to help others get diagnosed and treated in a timely manner. I’ve been given this second chance at a quality life, and my goal is to live that life the way I’m meant to live it by ensuring others have that chance as well.

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