6.29.2017

MS Relapse - 9 Ways to Survive Steroids

It’s not clear if I’m having a true relapse or if this is just faster progression than I’m used to. I’m in that murky relapsing/borderline/progressive, transition period.  Regardless of what this is or isn’t, my neuro and I decided to throw some steroids at it and see what happens. Roll the dice. You know, like most MS treatments.

I’ve had heaps of experience with IV solu-medrol/prednisone, so I know what to expect. These infusions are always a tough week for me, because I am a delicate fucking flower, so I like to have a plan.



Drugs
I never leave my doctor’s office or MS clinic 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, but at least I leave with zopiclone. The side effects of solu-medrol 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. You need them and they help, so ask. 

Snacks
Even with ranitidine, my tummy acts up. Some find their appetites increase (especially on an oral dose), I always have a painful tummy so I keep crackers, cheerios, toast, and ginger ale on hand. Homemade bone broth is better than packaged soups because of the sodium, which you wanna avoid because things are about to get real puffy.
Note: If you can't put down the chips because you love salt like I do, just know that your face is going to look like a pie for awhile and accept it. Don't let anyone take your picture and maybe cover all your mirrors.  

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. 
Note: I still drink coffee because technically, it's a diuretic and also, I don't want to lose my damn mind. Let's face it, I'm gonna be awake anyway, might as well be pleasant. Bonus: My bladder is normally a wreck but it's always more chill when I'm on the juice, making it easier to pound fluids.

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. Throw in some calcium if you’re not already doing so. Steroids can turn your bones to dust. You still need your bones.  

Namaste
Don’t trust your emotions when you’re on solu-medrol. 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
Oh yeah, hiccups. This is a WTF symptom that sometimes happens on steroids. I don't know how to fix this, but in researching this article I learned that 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 will 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. 

Steroids can have impressive effects, especially in early RRMS, they can feel like a freaking miracle. Over time, the results can be less thrilling. Fingers crossed, but remember, they’re not a cure. After 16 years and probable SPMS, I’m chasing that dragon and don’t expect to see loads of improvement but even a tiny one would feel like a win. At least until something better comes along.  

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12 comments :

  1. Great tips here! I usually go on near body weight dose of steroids when I'm having a bad flare from Lupus or Sjögren's as nothing else works, not even strong painkillers.

    For me the unbearable effects is more of the psychological one. I start pacing and feeling extreme anxiety. In the past my doc never gave me anything to deal with it as he didn't believe it was necessary, but now I know better.

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    1. Yes! No need to suffer. There's enough anxiety to be had, just for being sick! Good luck.

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  2. These are great tips - wish I had had them back in the day when I was on steroids - with my pasty pie face! Best of luck with this round ~ Barbara

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    1. Thanks Barbara. I'm feeling a bit rougher today but hopeful for tomorrow.

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  3. Steroids remind me of when I painted the exterior of my house... with my buddy pole.

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    1. Oh dear. That sounds about right.

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  4. Hi, found you on CIB thread and have included your link on Pain Pals regular feature Monday Magic - Inspiring Blogs for You! Great to connect, Claire x

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    1. Thanks Claire. Glad you found me. I'll check that out.

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  6. Love it!!!!! I love when I have to go for them if i'm having a relapse...... They make me sooooooooooo hyper :-)

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  7. Brilliantly written. I've recently finished two separate courses of steroids in as many weeks. Which was GREAT.

    I'm also in that murky probably-transitioning-to-SPMS netherworld, currently investigating treatment options and keeping everything crossed.

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