The day before deciding to start a high-dose course of prednisone to treat a flu-induced pseudo-relapse of my Multiple Sclerosis (MS), I went through my usual check-list of pros and cons. I’m familiar with the intense side-effects and general suckitude of steroids at this dose; and if I’m being real, I already knew I was going to take them, but examining the decision felt like the responsible thing to do.
The day before I pick up my script, I’m still struggling to convince myself that the decision to give steroids a shot makes more sense than to ride it out. I look for dramatic signs of worsening – the weakness and slowness that normally terrify me are now soothing me into believing I’m making the right decision by taking the poison. The magic potion of prednisone has worn off considerably since the days when it would booster-cable me back to my baseline. I’m dealing with a pseudo-relapse instead of an actual MS relapse, and my formerly malleable Relapsing Remitting MS (RRMS) has evolved into a clear case of Secondary Progressive MS (SPMS). A lot of doctors wouldn’t go near me at this stage with steroids, believing that the risks outweigh any potential benefit.
Which is easy for them to say, with their upright, functioning bodies and absence of need for Hail Mary interventions.
But this fever-induced set-back had me and my doctor concerned enough to give it a shot. Here’s how it went down.
The day before steroid treatment
I make a bone broth, and stock up on applesauce and ginger-ale knowing how badly steroids mess up my tummy.
Get my hair washed, buy four new books, and go for brunch with The Banker so he can have a recent pleasant memory of me before steroids make me turn on him.
still vain, tho
Steroids Day 1
I cover all the mirrors so I can remember my face as it was.
This is my first time getting oral prednisone (as opposed to IV), so I text my blogger friend, Beth(Bethy Bright And Dark) to ask for tips, like what drinking games she suggests for swallowing 62.5 bitter pills in 15 minutes. She’s starting treatment the same day as me, and I feel like it would be fun to place bets on which one of us will cry first.
Day one passes without incident, and feels similar to IV treatment.
So far, so good.
Steroids Day 2
I wake up with a headache after 3 hours and 17 minutes of “sleep”, but my legs are so chill I can’t make them seize up if I try.
My cheeks are pink and for once I don’t look like a corpse.
I check in with Beth and learn that “Umbrella Holder” is a job you can pay someone to do when you need both hands on your rollator. I marvel at all the ways MS is creating jobs and fuelling the economy.
Later, enraged about not being able to get up on a chair to reach a high shelf, I hurl an open box of chocolates into an upper kitchen cupboard. In defiance of physics most of the chocolates stay inside the box which only makes me angrier.
Steroids Day 3
The sweet spot of treatment, I haven’t slept and I don’t care.
My lack of spasticity is the bomb.
My balance is drunker than normal and my bowels are MIA, but my feet feel gloriously fucking temperate. I decide (and say it out loud) that I would endure this treatment every couple of months just to have a day or two where my feet aren’t confusingly burning and freezing at the same time.
Realizing I don’t own any red velvet pants, I go on a frenzied online shopping spree. This feels reasonable.
Steroids Day 4
My three day treatment is over. I do a timed walk that’s half a hallway less than the day before I started treatment. I feel too tired to have feelings about this.
My new books are still in the bag; I’m too spacey and in pain to read or even watch TV, so I spend time staring at the wall, willing time to pass.
Steroids Day 5
I wake up after 9 glorious (medically induced) hours of sleep.
After an actual bath I slather my legs in special-occasion Hermès body lotion, because sometimes not wanting to die can feel like a special occasion.
Just as things are looking up, I watch 2 episodes of This Is Us and feel tricked into a meltdown. I cry my eyes out because Jack, and life, and the Big 3. And. I. Just. Can’t.
I text Beth. It’s a draw. She’s melting down too.
Steroids Day 6
My stomach feels like it’s bleeding and I question my ability to make good life decisions. I vow to God and Beth that steroids and I are never, ever, ever, ever getting back together.
Decide that, for my suffering, I definitely deserve $700 Dior sneakers.
Don’t actually buy the shoes.
Maintain I deserve them.
Steroids Day 7
I have to be somewhere at 8:00. In the morning. I knock over my bedside lamp and shatter the bulb into a literal trillion pieces just to give The Banker something extra to do at 7.15, while I lay limp and useless in bed.
Finally decide to look in the mirror and fail to recognize my stretched and featureless face.
Notice a new burning pain on my torso and convince myself I have shingles. (I don’t have shingles.)
Steroids Day 8
I manage to leave the house despite feeling weaker and slower than I did before treatment.
I eat a full meal, including leftover birthday cake from my nephew’s party (that I missed).
I’m coming out of the effects of the drug, and it’s a huge relief – this was the hardest course of steroids I’ve ever done, but the treatment has failed me.
Steroids Day 10
We have theatre tickets, so I pace myself all day, careful not to blow through too many steps. I take two breaks during the day to lie down for a full hour. Briefly wonder if it’s possible that steroids have actually made me worse, but feel too afraid to Google it.
The effort it takes to walk from the apartment to the street breaks me.
On the way to the theatre I snap at The Banker and cry in the Uber.
You can’t even tell how psycho I am.
I told myself steroids would do something. And that part wasn’t a lie. The lie was that they would do something good. Some small thing to ease the burden of MS; to give me some fraction of increased strength or endurance – even if it’s just a taste; a temporary feeling of how it used to be, or a peek at what potential remains.
The lie I told myself was that it was worth it. The lie I told myself was that my disease is still modifiable. The lie I keep telling myself is that I have some control or even influence over what direction this thing takes.
Steroids Day 12
I continue to find pieces of shattered lightbulb in unexpected places.
I appreciate that my coffee once again tastes like delicious coffee.
I acknowledge that my brain on steroids doesn’t always tell me the truth.
I try, try, try to believe that just because I’m not yet as strong or as fast I was 5 or 6 weeks ago doesn’t mean I can’t still get there.
I count my blessings and pack my bikini. I’m spending the next phase of my recovery on a beach with people who love me. And if I can’t walk to the bar, I’ve got Optimus Prime and The Banker to support me.
In an attempt to calm down my MS I’ve been riding a rollercoaster of steroid-induced psychosis these last few days.
Warning: This is some Girl, Interrupted, peek into my brain on drugs, shit. You don’t need to call any hotlines. I dipped my toes in crazy for a few days but I’m fine now. Just, read at your own risk. This is what it was like for me to get steroids for an MS attack.
Dear Diary, Shit’s about to get weird.
Get up early, put on a cute hat, get coffee and head to the hospital. There’s a slight chance my incurable disease could see some relief, so today’s a good day.
Steroids are hard, but this time’s gonna be different. This time, I’m gonna be the perfect patient. I’ll wear pink pyjamas to match my pink, puffy, face and it’ll be adorable. I’ll be like, guys, I’m so sorry if I freak out and try to destroy you when the drugs hit me, but really, I know everything’s gonna be fine and everyone will be like, Wow, she’s got her shit together. Look at how awesome she did. High five!
My infusion nurse arrives at my home and asks if anyone else is around that could unhook my IV so she won’t have to come back. I tell her to ask the dog and she looks at me like I’m the unreasonable one. When she does come back she offers to take my vitals and flush my vein “if I want”.
By midnight, my tummy hurts and my bones ache but I don’t complain because it’s worth it.
The paltry AF sleep aid I was given barely makes my eyelids heavy, but I decide to embrace it and get shit done. Write the best blog ever, read all the things, learn to speak Russian. It’s like I’m on speed, but with no down-side.
Look in the mirror and decide my pie-face makes me look younger, because I’m a glass half-full kinda girl.
So far no benefit from the steroids and that’s making me anxious, but there’s still time.
It’s my last infusion and my lazy nurse asks me if I’m comfortable taking out my own IV. Again, I refer her to the dog.
Day 4 (morning)
Infusions are over and I’m not tethered to a pole anymore. I could shower, but I don’t. I mean, I feel okay, but not shower-okay.
In fact, I’m a bit dizzy and I realize I’m weaker than I was pre-steroids. Not a good sign.
Give myself a quick sponge bath and get a ride to the salon for a blow-out so I won’t have to lift my own arms to dry my own hair. I tell myself the worst is over.
Spoiler: No it’s not.
Day 4 (afternoon)
Appreciate the feeling of clean hair for 7 minutes and then crush my blow-out by going directly back to bed for 5 1/2 hours.
Wake up and feel sad it’s still light out.
Cancel plans for a rooftop hang with my Ginger Bestie and her BF.
Day 5 (morning)
Wake up and realize I can’t move my right leg. Panic a little.
Text The Banker, who got up hours before me and is in the next room, to come and help. He kisses me good morning (it’s lunchtime) and then patiently bends and straightens my leg until it feels limber enough for me to use it.
Step on the scale and wonder how it’s possible to have gained 6 lbs overnight when all I ate was saltines and half a banana.
Cancel plans to attend Canada Day BBQ with more besties and my sweet godsons.
Experience increased feelings of FOMO.
Day 5 (afternoon)
Make coffee. Pour it down the drain because prednisone makes everything taste like poison.
Decide steroids have not helped and that I’m ready for my Make-A-Wish. Feel too sad to think of any good wishes.
Scan Spotify for a playlist that will match my mood. Find nothing in the genre of Devastating Illness Ennui. Briefly consider one called All the Feels before deciding that anyone who uses this phrase should die.
Day 6 (morning)
Accidentally knock over a bag of garbage and decide not to pick it up. Ever. Decide I hate everything, throw out half my stuff and then wonder what I can buy to make myself feel better. Cancel plans to attend a holiday BBQ in the ‘burbs.
Make a note to stop making plans.
FOMO’s at an all-time high.
Day 6 (evening)
The Banker is hiding in the storage locker with the dog asking Siri if Werewolf/Vampire rules apply to Solu-medrol Beast People.
After holding back tears and trying to suppress a full-on meltdown all day, decide that confronting the loss of mobility is actually a pretty reasonable excuse for a meltdown.
Call my parents and try to get them to meltdown too. Meltdowns for everyone!
Congratulate myself for not being a drug addict or an actual alcoholic because it’s really tempting to not wanna feel any of this.
Decide extreme sadness is not sustainable and brainstorm ways to pull myself out of this hole.
Download a meditation app. Don’t open it.
Decide to feel grateful that my tummy hurts less than it did yesterday, that my coffee no longer tastes like arsenic, and that I still, probably, have friends and a husband, somehow.
Allow myself to grieve what I’m losing. Know that somehow, I will come to terms with this fucking nightmare.
Side effects include buffalo hump, moon face, and extreme hiccups. I wish I were making this up.
How To Survive Prednisone For An MS Attack
As a long time multiple sclerosis patient with very active disease, I’ve had way too much experience with the roller-coaster ride that is treating an MS relapse with IV prednisone (solu-medrol). While these steroids can produce impressive results, they also prove that if something seems too good to be true, it’s probably gonna give you acne. It’s definitely gonna make you constipated.
How to handle the side-effects of prednisone
I never leave my first prednisone infusion without a prescription for something like ranitidine (to kick the stomach acid) and something (strong) to help with sleep. I usually ask for horse tranquilizers and get a dirty look. Worth it. The side effects of steroids are well known, but some docs wait until you call back the next day because you’ve been awake for 26 hours, before they offer you an Rx. Don’t suffer.
Some find their appetites increase on prednisone, and that sucks extra for them, because steroids make everything taste like poison. I always have a painful tummy so I keep crackers, dry toast, and ginger ale on hand. If you’re fancy, homemade bone broth is better than packaged soups, because of the sodium, which you wanna avoid because things are about to get real puffy. If you can’t put down the Miss Vickies because you love salt like I do, just know that your face is gonna look like a pie for awhile and accept it.
For the first time ever, I don’t mean booze. You have to hydrate like hell with actual H2O because prednisone means water retention. Like, stay out of the rain or you will probably absorb and retain that too. In addition to all the water-weight, this drug is constipating AF so try to get ahead of that. Whatever your bowel routine is, double it.
Stuff to read
When I’m wide awake in the middle of the night, it’s tempting to turn on my laptop and write. Or read gossip blogs. Or shop. I’m feeling wired and creative and a little bit sorry for myself, like I at least deserve a new lipstick, maybe some shoes, just for having to go through these things. Resist. Screen time in the middle of an insomnia attack is def going to encourage wakefulness longer than flipping though a magazine or reading a book will. Sleep is essential to healing, so it’s important to keep the tech turned off.
We covered pie-face, but my normal alabaster complexion has a tendency to turn fever-red on this drug, and steroids at this dose can cause photo-sensitivity, meaning easy burns. If you’re a pasty-faced, day-walker like I am, make sure to wear your SPF 60 even if you’re only out for a quick minute. Then again, if you’re also lazy like I am, just don’t go outside.
Don’t skip your regular meds. This isn’t a drug vacation. I know, sometimes I’m just so sick of putting pills in my mouth all day. But it’s important to stick to your routine. Talk to your doc about adding a calcium supplement. Steroids can turn your bones to dust. You still need your bones.
Don’t trust your emotions when you’re on prednisone. And maybe warn your friends and family. Everything is more intense, and on top of it, you’re having a relapse. Know it’s the powerful drugs coursing through your system and don’t dwell on it. If you do lose your shit and bring the drama, you have an out. Blame it on the drugs and apologize. You weren’t you.
This is a WTF symptom that sometimes happens on steroids. I don’t know how to fix this, but the good news is there are actual hiccup support groups for people taking solu-medrol. I mean, if you have MS, hiccups are probably the least of your problems. Then again, when I have hiccups, I make a big fucking deal about it. I cry real tears and ask why everything bad happens to me. Then I plug my nose and chug a glass of water until I’m sure I’m about to drown. If I survive, I log onto JCrew and buy a dress, because I’ve just been through hell and I deserve it.
You might feel like cleaning the gutters, rotating your tires, moving a piano, I don’t know what you’re into, but this is artificial energy and you will have to pay it back. Remember, your body is healing and you need rest to let it recover. As tempting as it is, try not to do the thing (that is to say, all the things) we all want to do the second we feel that unfamiliar boost of strength or energy.
Especially in early relapsing remitting disease (RRMS), steroids can feel like they’re working miracles, but remember, they’re not a cure, and are only prescribed to get you through an attack faster by reducing inflammation. If you’re having a relapse and getting this treatment, hang in there. This too shall pass.