How I’m using Rituximab and steroids to treat my autoimmune disease

In this post we cover Rituximab/Rituxan and steroid treatments in the context of autoimmune encephalitis. But first, bear with me as I take a hot moment to relay a quick personal update.

Please note that I am not a medical professional. Nothing written here is prescriptive for what you should do for your situation; this blog is simply to provide a patient perspective on living with a chronic illness. What works for me may not work for you. Every case is different and it is important to discuss the intricacies of your illness with your own medical team.

Where the heck has the last year gone?

Between my last personal update and now, I:

  • was hospitalized 3 times 🏥
  • received thousands of donors’ worth of blood product 💉
  • moved nearly 2000 miles across North America 🌎
  • got married 💍
  • became trapped in the USA 🇺🇸

How’s that for a sound bite? I feel like that should be more than enough to constitute a year well-lived.

But that’s not even all of it.

Of further note, I got my dream job as the Communications Manager for a multi-million dollar real estate developer, yet decided to quit just before the pandemic started. For good reason, I assure you. I half contemplated starting another blog to unpack the lessons learned from that experience—until I realized that my health journey is one I feel far greater need to tell, and that I only have so much energy (few too little “spoons“) to go around at the moment.

Frankly, I’m overwhelmed by where to begin. I have a heavy disconnect between my future goal of having my story out there in the digital ether, and my present state of struggling to write. It’s tormenting to know that I have a natural ability to write somewhere inside of me, but I’m thick in yet another cognitive relapse that leaves me fumbling for the key that would put the wordsmithing gears back into alignment.

That said, I hope you can be a bit patient as I “will” my way back into making writing a regular practice. I’ve made baby steps via getting back into the Instagram game again, with discussion on the frustrations of trying to attain healthcare in America.  Shoutout to the kind community there that has provided some wind to my sails, motivating me to continue to share my journey. If you want the scoop on the day-to-day, my Instagram feed is the place to check.

But you’re here for a blog. So let’s get to the meat and potatoes.

This post is written from the patient perspective for anyone that wants to know about Rituximab/Rituxan, high dose steroids (Solumedrol/Methylprednisolone), and/or autoimmune encephalitis.

Let’s jump in.

texas sky, field, beautiful
This is where I find myself living now—Texas. Not bad.

From autoimmune encephalitis diagnosis, to Rituximab, to remission, then to relapse.

I’m two weeks out from my 4th dose of Rituximab and high dose steroids to treat seronegative autoimmune encephalitis, a condition I was diagnosed with last summer. After failing to sustain improvement on IVIG in 2019, 2 doses of Rituximab (spaced 2 weeks apart) brought me back to baseline in roughly 10 weeks.

It was a miracle. After spending the summer in and out of the hospital and dealing with declining neuropsychiatric functioning for 5 years, it felt like I finally had the feet underneath me to start making up for time lost to impacts of the disease (read: establish a career and recreate a social life).

A 3rd “maintenance” dose was provided to me ~13 weeks after the initial infusion. With naïve optimism, we all thought that I had beat autoimmune encephalitis and never needed to be treated again.

Emphasis on naïve.

Fast forward to mid-March, about 4 months after my last infusion, and I realized within a span of 2 weeks that my world was falling apart again. Thoughts became muddled, verbal fluency plummeted, and derealization started to pop up in waves.

On the bright side, the change in cognitive functioning occurred too suddenly and severely for me to be in denial. My relapsing state could hardly be ignored. On the dimmer side, the Canadian medical team that originally treated me was inaccessible now that I found myself living in the USA.

Entering April, I had to come to terms with pressing pause on life yet again in order to simply tread water without drowning entirely. In the end, I spent the entire month and more doing medical chores—all in the name of trying to attain Rituximab.

So what’s the big deal about Rituximab, anyway?

Rituximab is a cytolytic antibody directed against CD20, a protein found in B cells. It is used to treat a variety of autoimmune conditions and cancers such as rheumatoid arthritis, multiple sclerosis, leukemia, and lymphoma.

In my case, it is thought that destroying B cells will stop the production of the autoantibodies that are attacking my brain and causing inflammation. Thus, no more autoimmune encephalitis (AE).

Of course, AE falls into the category of tricky diseases to treat. The clinical presentation is variable, diagnostic testing is not definitive, and treatment response takes time and varies tremendously from patient to patient. On top of that, the field is relatively young and remains poorly understood.

Long story short, Rituximab is hard to access yet seems to be one of the most effective drugs to treat AE. It doesn’t work in all cases. But when it works, it can REALLY work—unlike some of the less heavy hitting, “band-aid” medications that doctors often use first.

It also comes with a nice $24K price tag for one infusion (at least, in Texas. I’ve heard it varies from state to state, setting to setting (hospital vs. outpatient)). I’m sure you can imagine the difficulty in getting insurance to pay for that, especially since AE hasn’t made it onto the FDA’s approved list of use cases.

Between finding a new doc, cobbling together previous medical records, trying to teach myself how the American medical and insurance system works, getting mad at fax machine services, phoning insurance representatives, doing all this with reduced staffing during coronavirus, and other fun details in between, I probably made 50+ phone calls in April. Add brain fog and fatigue to the mix, and it felt about as exhausting as having a full-time job.

I’m not suggesting it will take this much effort to attain Rituximab if this is the path you have ahead of you. I had some funny complications to work out—hopefully you’re not starting from scratch finding healthcare resources in a new country 😉. Turns out I chose a good doctor with competent and helpful staff who helped me eventually get approved for Rituximab. But I made my choice from the get-go to be proactive and stay on top of all the moving parts. I wasn’t interested in simply letting time run it’s course, possibly resulting in hospitalization as I waited around. No one will have the same sense of urgency and persistence to fight the battle to get their meds as someone who is relapsing and quickly losing their quality of life.

You’re going to nuke your immune system in the midst of a global pandemic?

Yes. But one doctor thought this would be irresponsible.

If you’ve read some of my early posts, you’ll know that I’m also the patient of an MD who works out of California/Washington’s Center for Complex Diseases (who previously worked at Open Medicine Institute). He’s been a central part of my medical team in the past, so naturally I booked an appointment with him when I began to relapse.

Again, I was pretty naïve. I knew it would be a stretch for him to help me set up an infused medication in Texas, but I had failed to consider he would be actively against me getting Rituximab altogether. When I consulted him during an appointment in early April, I found out his office had put a complete halt on all infusion appointments. Coronavirus concerns were too great for him.

I was shocked and deflated.

His reasoning was fair enough and I get where he came from, especially given our limited knowledge of the virus’ effects. But it was beyond frustrating. It felt like more of the “you-sound-coherent-you’ll-find-a-way-to-survive” approach that had been the theme of the past 5 years. I had gained so much ground since last summer; it felt like all of that was another step closer to coming undone.

But I knew I wasn’t going to let this setback stop me from getting treatment. Relapsing comes with a cost too, and the sources I scoured post-appointment did not give me reason to believe avoiding Rituximab treatment to decrease COVID-19 complications was warranted.

In the end, I soldiered on and found a local Texas neurologist who agreed that I needed Rituximab ASAP. In terms of coronavirus, he wasn’t too fazed; he just said to be careful and take precautions not to get the virus. While this hiccup set me back a few precious weeks, I’ve read enough horror stories from other AE patients to know that I’m lucky to even have Rituximab treatment in the first place. So I’ll refrain from further complaint in this post.

If Rituximab is part of your treatment regimen and you are concerned about whether or not to go forward with infusions during this pandemic, this video from Dr. Heather Van Mater and the Autoimmune Encephalitis Alliance is worth your consideration.

Dr. Van Mater is co-director of the Children’s Inflammatory Disease Program at Duke Health in North Carolina. The general* recommendation is to not stop immunosuppressive medication if you have active autoimmune disease.

 *note that this blog does not constitute medical advice. Please do your due diligence to do your own research and consult with your own healthcare professionals to determine the best route forward for your individual case.

You get Rituximab! You get steroids!

By early May I finally had all my ducks in a row. The manufacturer, Genentech, gave their seal of approval to provide the drug to me. And at the last moment I found out my doctor added 3 consecutive days of high dose steroids, Solumedrol/Methylprednisolone, to my regimen. Solumedrol is thought to reduce brain inflammation, increasing the speed of recovery.

The administration of high dose Solumedrol and Rituximab together is a bit unusual, though not unheard of. Typically, patients receive a low dose of Solumedrol to prevent infusion reactions (e.g. hives, headaches, rashes).  I’m assuming the high dose was added due to the weeks-long delay in getting Rituximab approval after I started relapsing, but I’ll have to clarify that at my next appointment.

Settin’ my veins a tingle—finally.

infusion centre, rituximab
Infusion view for the day. Cozy with my 2 blankets.

Day 1 Treatment

Arrival and Pandemic Precautions

Face mask on, hand sanitizer sprayed, temperature checked, and inside the infusion centre I went. Entryways were staffed to ensure that these basic precautions were followed, and that the number of visitors were kept to a minimum. Apparently they were only doing half the number of infusions as usual, to allow additional space between patients.

Once I was seated in my reclining chair for the day, my medication order was computer submitted to the on-site pharmacy. During the wait, I signed a consent form and had my IV put into place.

IV Placement 💉

While my veins aren’t the worst to find, I still make sure to increase my water intake in the 24 hours beforehand and ask for a warm pack to be placed on the site for a few minutes. No point in risking misplacement and needing a second needle poke. Hydration and warmth get the vein to “pop”, helping things go smoothly. Pain from an IV poke is generally worse than a routine blood draw, but it’s usually not bad and subsides pretty quickly.

If the site remains quite painful after a couple minutes, make sure you tell the nurse. It’s possible they hit a nerve and need to find a different site. This is uncommon and I don’t mean to scare people, but I provide this warning as it HAS happened to me before—and the pain will only get worse when medication is infused.

Steroids and Premedications

In the first hour I received 1000 mg (dissolved in 100 mL of saline) of Solumedrol/Methylprednisolone. The site became tender, so I had a heat pack placed on top of the IV for comfort. With IV steroids it’s pretty common to develop a metallic taste in your mouth, and this occurred to me within 15 minutes of the start of infusion. I just kept drinking water, but I’ve seen others suggest bringing mints to mask the flavour.

Next came the standard Rituximab premedications of Tylenol (650 mg pill) and Benadryl/diphenhydramine (25 mg injection). Again, this is to prevent hypersensitivity reactions.

The Benadryl was injected via syringe directly through the IV over a couple minutes. Normally it’s diluted and hung to drip through the IV, but I was told this time it wasn’t diluted due to… coronavirus shortages? Staffing shortages related to coronavirus? Something along those lines. Anyway, I was warned that it would sting.  In actuality, it was more like a diffuse, biting, cooling sensation at the site—a bit uncomfortable, but more weird than anything else. Internal tingling under your skin and inside your vein is not something I’ve felt before.

Rituximab

Six weeks of buildup, all culminating in 3 hours of minimal consciousness. Mission: achieved! That’s how long it took for 1000 mg (dissolved in 900 mL of saline) of Rituximab to be pumped through my veins.

I say “minimal consciousness” because Benadryl put me to sleep within 10 minutes of administration. I was loosely aware that nurses were coming by every so often to make sure I was doing ok, and gradually increasing the flow rate until it was going at 650 mL/hour by the end. If infusion reactions occur, they occur most typically in the first hour. Lucky for me I tolerate Rituximab without any issues.

Now that I’ve established a medical history at this clinic, I’m told future infusions will only take 1.5 hours. The Rituximab will be more concentrated, and the infusion rate will be bumped up quicker. But between today’s combo of steroids + Rituximab it felt like an all-day affair—in and out between 11:30 AM and 4:30 PM.

After-Effects

I had my IV wrapped up for use the next day, got picked up by my husband, and landed on the couch for a few more hours of sleep.

It took awhile for the Benadryl to wear off; once it did, I remained wide awake for the rest of the evening and could only sleep for 3 hours of the night. Blame the steroids. They’re known to produce that effect.

Day 2 and 3 Treatments

Just the Steroids, Ma’am

I returned 2 consecutive days for further steroid treatment. Same routine as the first day: 1000 mg of Solumedrol/Methylprednisolone infused over 1 hour. Same mild metallic flavour in my mouth. Same request for 2  blankets from the warming cabinet—it’s cozier that way 🙂.

IV’s can last 3-5 days before needing to be replaced, and mine lasted through the time I needed it. I wouldn’t have wanted to keep it any longer, however.  The nurse wrapped it too tightly after Day 2, causing a dull, bruised sensation at the site.

Excuse me for being a drama queen here, but it felt like the catheter was rubbing against my bone any time I moved my arm the slightest amount. You’d think all the needles I got while hospitalized would have habituated me to these pains, but I suspect it has actually done the opposite—I had a couple negative incidents which feel as though they’ve increased my sensitivity to certain poking sensations. So I was relieved to find out when I arrived on Day 3 that the IV catheter hadn’t gone through the opposite side of my vein, sparing me from needing a fresh IV needle.

I drove myself to and from my final infusion. Steroids don’t seem to have a discernible effect on my driving. Overall however, it’s probably safest to let someone else chauffeur you from these types of appointments.

infusion arm, infusion centre, rituximab, IV
The arm of yours truly taking centre stage. From top to bottom, left to right: 1. IV 2. Sleeve for keeping the site protected at home 3. Heat pack over the IV minimizing discomfort at the site of infusion 4. Solumedrol/Methylprednisolone 5. A painful arm, wrapped too tightly 6. The scene of the crime, two weeks later.

Side Effects

I had no side effects I would attribute to Rituximab, minus some minor neck soreness for a couple days. I’m talking only a “2” in intensity on a scale of 10.

I had some minor side effects from the high dose steroids, however. I’ve already mentioned the metallic taste; that only lasted a few hours after each infusion.

More impactful were the changes in energy. The night of each infusion I dealt with insomnia, getting only a few hours of sleep at night. The 3rd night I decided to take melatonin and managed about 7 hours of shut-eye. As for the week following the final infusion, I had a general bump up in energy. Some nights required melatonin to get me to sleep. By day 10 my sleep pattern was roughly back to normal.

Another distinct Solumedrol side effect is blurred vision. I have not heard this widely reported, but for me it happens to my right eye every time I get Solumedrol, to a degree that roughly correlates with dosage. Strangely my left eye remains normal, but I’m not complaining because otherwise I would temporarily need new glasses. The change feels like it’s about -2.00 diopters. But with one eye normal, one eye blurry, I can get by. I recovered the majority of my visual acuity after week 1, but by the end of week 2 it still seems a little off.

Some people find steroids increase their hunger. This did not occur to me; my appetite remained the same.

Whether Rituximab, steroids, or just plain ol’ strange physiology, my skin has improved a bit. I was breaking out in pimples the few months before treatment, but that state seems to have subsided. The correlation probably isn’t strong enough to suggest causation, but I thought I’d mention this since I’ve read accounts of people suggesting Rituximab and/or steroids actually worsens their skin.

Playing the waiting game: Round 2.

“Do you feel better now?”

Uh, no. Not really. Wait; maybe?

The short answer is: I don’t know. It’s hard to tell. Autoimmune encephalitis causes a fluctuating course of symptoms, without a clear trajectory for recovery. Everyday—sometimes every hour—feels different. If I were to generalize and say on an average day prior to treatment I was down to 50% of my baseline level of functioning, now I might say I average closer to 60% of baseline.

Looking through a different lens: I don’t feel worse. So by default, I guess, I must feel a little better. I hesitate to say this with certainty though because a) it’s only been 2 weeks, and b) my AE symptoms can have natural fluctuations greater than 10% week vs. week. And then there’s the possible influence of the placebo effect.

The Canadian doctor who first treated my AE warned that it would take 6-8 weeks to see improvements, and her estimate proved to be correct. By week 8 I could feel definite improvement in cognitive function; by week 10 I was like a brand new person—nearly back to normal. I have my fingers crossed that the recovery timeline will be quicker this time around, since my starting point this time was not as bad as my starting point in hospital.

Everyone is different though. Judging from patient reports in forums, 6-8 weeks for improvement is a very loose average for those with encephalitis. Complete recovery by week 10 (like my first remission) seems to be on the uncommon side, often taken more like 6 months or longer (years even) and requiring some form of rehab. Lingering, lifelong effects are not unheard of. On the flipside, I’ve heard stray reports of people noticing significant improvements in less than a month. And on a different side altogether, some people find a dead end with Rituximab and need to explore other treatment options.

Do take this all with a grain of salt. I repeat: everyone is different. I hesitate to make these generalizations here—patient responses are really all over the map and I can’t tell you what course your illness will follow. But I think it’s helpful for you to have a frame of reference from someone who’s lived through this and sees what other patients write about their AE experience. I know I would want one if this were new territory for me.

Plus, you might find yourself getting the “do you feel better now” question a lot. It can be discouraging to realize you either don’t know, can’t tell, or remain the same. I get asked this every time I speak with my dad, who means well but doesn’t understand the details of my illness. I have to gently remind him that the expected timeframe for recovery is on the order of several months, not immediately. And that the road ahead is poorly defined, with the possibility of further medications required.

What’s on the other side?

Overall, I want you to know from the outset that recovery from autoimmune encephalitis may take a very healthy dose of patience. You’re running a marathon, not a sprint. If recovery occurs quicker than expected, count your lucky stars and celebrate because you’re in the minority.

Actually, celebrate regardless. If you’re reading this right now, you’ve still got fight in you. It takes real strength to live through this beast of a disease, one which is underdiagnosed and poorly treated.  I’ve had my share of dysfunctional days laying on the floor; I’ve also had days where the fog clears and I feel more like myself. Hopefully the road ahead contains more of the latter.

But in this moment right now, I’m celebrating that I have survived my chronic illness. And today, that is enough to keep me going.

4 Comments

  1. Diane Davis
    June 8, 2020 / 7:59 pm

    Thank you! I have GAD65 brand AE, helped by IVIG for 6 years, now not doing so well. Plan is to begin Rituxan as soon (ha!) as insurance approval comes through. Many medication sensitivities/allergies, so am a bit nervous. Your message gives me hope and strengthens my resolve to at least try this. I wish you a strong recovery…

    • wherearemypillows
      Author
      June 9, 2020 / 3:10 pm

      Hi Diane thanks for your message! I am glad to hear that you found this helpful, and I wish you health and healing as you go forward with getting Rituximab. I have heard that nurses are generally pretty good to watch out for any reactions in the first ~hour of infusing, which is when a potential reaction is most likely to occur (if it does at all). In my case I found Rituxan easier to tolerate than IVIG (which gave me a mild ‘general malaise’ feeling). Good luck and look into the Genentech Patient Foundation if insurance is being a pain 🙂

  2. June 10, 2020 / 3:07 pm

    I’ve only just read this one entry but I share your frustration with the medical system. It has been a battle of epic proportion for me to find care, and it’s shameful. I look forward to reading more of your blog as soon as I have the time.

    • wherearemypillows
      Author
      June 10, 2020 / 3:28 pm

      Thanks for reading! I wish you were having an easier time, but alas it seems that many are in a similar boat with trying to make their way back to good health. Keep strong and keep fighting

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The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with chronic illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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