I Did 8 Weeks of IV Steroids. Here’s What Happened…

IV Solumedral: My Only Hope for Graduating College

This semester, I wasn’t at school until October… Though I’d never missed a single day of sitting in the classroom.

After returning home from my summer internship in August, where I’d felt almost 100%, I noticed symptoms creeping back in. At first, I waited it out to see if they would pass, but I kept getting worse and worse, slipping farther and farther into a tormented mind that I no longer recognized.

By October, I was completely gone.

Suddenly, I had symptoms that were totally unmanageable:

  • Not being able read my textbooks/do homework
  • Feeling “out-of-it” and struggling to understand the world around me
  • Out-of-control involuntary movements
  • Rage attacks/severe mood swings
  • Literally wanting to die because my existence was excruciating

After consulting my PANS neurologist, she said I’d need a powerful biologic drug called Rituxan, but I had to be home to start it. In the meantime, there was a temporary solution that might let me finish the semester: IV steroids.

So for the past eight weeks, I’ve spent one afternoon each week at an infusion center, getting 1000 mg of Solumedral.

The idea was that doing this weekly mega dose of steroids would calm the autoimmune reaction causing my symptoms without making me more susceptible to infections—and without damaging my bones, as daily steroids can do.  (I already have serious bone loss in my spine from anorexia and a year of daily Prednisone.)

As I type this, thanks to weekly Solumedral, I’m now functioning at 95%. My recovery has been nothing short of a miracle, though as with all the other treatments I’ve tried, there were a lot of ups and downs.

Here’s how my recovery unfolded..

Week 1

Astonishingly, within hours of the first dose, I was able to do my homework for the first time in weeks. My depression was suddenly gone, and my involuntary movements stopped within a couple of days.

I got well enough to regain insight into how far gone I’d been, and I was shocked.  I recovered from symptoms I didn’t know I had.

My personality returned. I felt like I’d just woken up, or that I’d come home from a long, dreadful vacation.

Unfortunately, a few days later, the positive effects of the steroids wore off, and I was just as sick as I was before the first dose of steroids. Was this how it would be for the rest of the semester—a few good days each week and then becoming tormented once more?

Week 2

Thankfully, after the second treatment, I came back to myself again. I still had a lot of anxiety, and I still felt like my mind wasn’t as clear as it should be, but I was no longer living in constant despair. Just as in the previous week, the effects started to wear off as it got closer to my next treatment, but I didn’t slip as far as I had the first week.

Week 3

After the third treatment, my mind was completely clear. I started enjoying my hobbies again and even became interested in my chosen field once more (this is always the first thing to go when I’m sick and the last thing to return). I felt a little “off” and unfocused by the fifth day, but it was barely noticeable compared to the regressions I’d had in the first two weeks.

Week 4

By the fourth week, I was back to getting A’s on my assignments. I became more engaged with life, and I was able to follow along in lectures and contribute to class discussions.

It seemed like the whole PANS relapse had never happened.

What Do You Mean Recovery Isn’t Linear!?

But if there’s one thing I’ve learned in the last three years of my PANS recovery, it’s that progress is never linear. Sometime in the fourth week of treatment, I caught some kind of cold and went way backwards again.

The fifth steroid treatment barely helped.

The sixth one had only a slight effect.

It’s still not clear what happened, but somehow, whatever caused the flare died down, and my seventh and eighth infusions were successful. I’m now back to 95% again.

Words for the Wise…

And so, if any of you are about to start a similar regimen, my best advice is to realize that even if steroids help quickly, it can take some time for the full effects to kick in. You have to be patient.

If there are flares along the way, try not to get discouraged. You’re talking about healing a brain and calming a raging immune system—I don’t know if it’s possible for anyone to make a full recovery quickly if you’re as bad as I was.

Now What?

I have one more infusion this week, which is also my last full week of college classes!  Then, it’s exam time and…. GRADUATION!

I know I wouldn’t be graduating if it weren’t for this treatment.  And as painful as the relapse was, coming out of it has given me a renewed sense of gratitude for everything—especially the fact that I’m well enough to be cramming and stressing out about finals right now.  I’m so grateful for another chance at life!

But am I cured? Is this treatment the last thing I’ll need to kick PANS out of my life for good?  Probably not.  Weekly IV Solumedral was only supposed to be a temporary solution that would allow me to finish school—and it looks like that’s exactly what it’s done.

Maybe I won’t relapse after my last dose.  Maybe I will.  Who knows?  I’m still working with my doctors to figure out what’s next.

So we shall see what we shall see….

It Isn’t You: Defying the Shame of PANS

Since the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. Shame that I felt no control over my mind or body. Shame that I couldn’t do what I once could. Shame that I lashed out at my parents and said things I never wanted. Shame that I was spending more time with doctors than friends. Shame that I’d become a different person that I hated.

The shame can be as painful as the symptoms themselves.

Continue reading “It Isn’t You: Defying the Shame of PANS”

Daring to Dream Again

Photo cred: NEPANS.org

This week, despite recently having the best few days I’ve had in several years, my OCD came roaring back, worse than it’d been since 2014. I started ticking again, too. People would say things to me, but their words made no sense. All the symptoms that I thought were gone returned to taunt me. Just as you think you have the upper hand with this disease, it can swoop in to tear you apart all over again!

Continue reading “Daring to Dream Again”

Minor Symptoms, Major Anxieties

I still can’t believe I went so far from home for this internship…

A few weeks ago, I took a huge leap of faith, packed up my bags, and got on a plane to the Big City. As the skyline came into view, the realization of what I was doing for the next two months hit me a hundred times harder than the impact of touching down on the runway. I was about to start a prestigious internship, living in a part of the country where I’d never been and working with people whom I’d never met. What had I gotten myself into?

Continue reading “Minor Symptoms, Major Anxieties”

3 Years Later… The Beginning of the End?

Celebrating 3 years of blogging and the beginning of the end of my battle?

Three years ago today, I published my first post on this blog.

At the time, I was in a downwards spiral, falling apart and losing my mind. My doctors were baffled and running out of treatment options, and I was threatening to take my life. But then, my family figured out I had PANDAS/PANS. Thus began a three-year fight to regain everything my illness had so suddenly stolen from me.

Continue reading “3 Years Later… The Beginning of the End?”

My Narcolepsy Diagnosis Almost Killed Me

What happens when you’re diagnosed with narcolepsy, and every treatment fails?

Three years ago, I wanted nothing more than to be awake.

After a sore throat on my first day of college, I’d become increasingly incapacitated with sleepiness that nothing could relieve. I spent the majority of freshman year asleep, existing in a dream-like state where I never seemed to attain full consciousness. I hoped for a solution to my problem that worked as quickly as it had begun, but nothing prepared me for what my sleep neurologist said instead, on that fateful May afternoon: Continue reading “My Narcolepsy Diagnosis Almost Killed Me”

The Truth About My PANS Recovery

PANS can mean losing your very self… And then trying to get it back in recovery.

The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?

Continue reading “The Truth About My PANS Recovery”

Why I’m Working through PANS

Can someone with PANS/Lyme keep up in a competitive environment?

A couple weeks ago, I was elated to find out that I’d been accepted for a summer writing internship!  This wasn’t just any job offer, but a highly competitive internship that I’ve worked towards and dreamed about for years. It seemed so surreal that this door had finally opened!

Continue reading “Why I’m Working through PANS”