Prednisone

How To Fail At Steroids For An MS Attack.

26 Comments / Prednisone, Relapse / January 6, 2021

How To Fail At Steroids For An MS Attack.

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. 

Day 1

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!
 

Day 2

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. 

Day 3 

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! 
 

Day 7

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. 
 
Make plans for the weekend and keep going. 

How To Survive Prednisone For An MS Attack

16 Comments / MS treatments, Prednisone, Relapse / June 26, 2020
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

Drugs

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.  

Snacks

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.  

Fluids

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.  

Sunscreen

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. 

More drugs

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.  

Namaste

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.

Hiccups

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. 

Netflix

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.  







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