Based on prior experience, I did a little research this time to help the experience be a little easier. The first time was rough. For me the side effects are: zombie-white skin, fatigue (initially), then fake-energy (you feel like you should deep-clean your house, but it's deceptive because you really are depleted from the 'roids), metal taste in mouth for a few hours (yuck), headaches, severe eye pain, dizziness, sleeplessness, munchies.
This time, my awesome neuro team: Dr. DeSabrio & Kelsie Montgomery prescribed a week prednisone taper right after the 3rd infusion, this should help the headaches/eye pain. Here is what else I did this time around to make it easier. Hopefully I won't have to do this again anytime soon, but hoping these tips will help someone else out! We all know MS is very individual, so my experience might not be the same as yours, but hopefully this will help. I'll add too that I'm on Copaxone for my DM and I do eat very clean (no dairy, gluten, sugar, red meat or processed foods). I do believe this helps me overall.
Day #1: My friend Jenica came with me. Due to her medical conditions, she's been here a lot and showed me the ropes and introduced me to everyone. This helped tremendously! Easy vein draw, nursing staff here is outstanding. I did get really cold during the infusion but felt fine otherwise. Marked dizziness and weird-eyes after (like messed-up perception). Really tired at home, laid down for a few hours, just took it easy. Metal taste lingered for a few hours then faded. I was able to eat dinner and walk around the block. Had trouble sleeping--took benedryl and long bath around 10pm, but still couldn't sleep until 1am. I get hip pain with steroids sometimes, but a bath and CBD cream from a friend make it not a problem.
Day #2: Back at the infusion clinic for round #2. Jenica is here getting infused as well, so it was nice to sit and visit. The nurses continually amaze me with their kindness and painless draws. Because I was so dizzy last time, I had my 17 year old son drive me back and forth. I always enjoy time with him, so that was a win. Metal taste in mouth again. I came home and laid down for a couple hours then was hit by manic energy and a ravenous appetite--not the norm for me. It's like I could not stop chowing down. The manic energy was nuts and I knew it was all fake energy--which makes it even worse. I could feel myself starting to get irritated too--a tad of 'roid rage. I was able to weed the yard, do a ton of dishes, sweep and mop an entire floor of my home, etc. Unfortunately two benadryls, a unisom and 2am came before I could sleep. It was the last day of school (I'm a teacher), so I was able to sleep until 10am the next morning. I can see my face is swelling some and I'm alternating between flushing and zombie skin:)
Day #3: Last one! My face is definitely swelling and I'm packing about 5 lbs. of water weight. I've worked so hard to lose weight and keep it off, trying to remind myself this is temporary and part of the wonder that is steroids. I do have some numbness in my finger tips and a little on my face (which is unusual). I'm guessing it's part of the inflammation at the c-spine. Hopefully it'll simmer down with the steroids. Oddly enough, I have a sweet older lady down the street who was infusing next to me. She's lacking enough blood in her body (they don't know why) so she was getting blood transfusions all day. Things can always be worse. My infusion lasted an hour, again, painless and easy. The Solu does makes me really cold, so those warm blankets are nice. Today, the manic energy and need-to-feed had warn off. I was just really tired. Metal taste and zombie skin are back. I do have a lovely turquoise bruise from day #2, but considering how fair-skinned I am, no complaints! Got home around 3pm and slept until 5:30pm or so. Ate a little, went on a walk and had a full night's sleep (11-8). Not too shabby.
The Morning After: I slept well and woke up with pretty decent energy. Today is actually my 41st birthday. Every birthday, I usually go with my little guy, Nate (12) on a hike or a bike ride. I didn't know how it would be this year with coming off Solumedrol. Coming off without a taper at the hospital a year and a half ago was BRUTAL. I started my morning off with a taper, felt good and went on a hike with my ginger. Not terribly long, about 2 1/2 miles, and early in the morning before the desert heat sinks in. It felt glorious to be outside, and this was my way to stick it to MS. Definitely having facial swelling, still pretty white and retaining water. Will be trying to flush out my body and get rid of the excess. Numbness not as bad. Energy is sustainable and level enough for me to hike and kick it around the house. Working on positive mindset as I launch another year on this earth and give great thanks to my God for the many blessings I have and for the many good things I can still enjoy. I'll be tapering down on steroids (prednisone) for the next week. Will make note of any changes here.
Coping with Solu-Medrol: Quick & Dirty List!
- Drink a lot of water before you have the infusion. This helps your veins and body handle it all.
- Make sure nurse runs saline through your injection site before and after to prevent bruising.
- Try to infuse as early in the day as possible so you can sleep more. I was teaching the first two days, so I infused a little later-which made sleep difficult.
- Eat before & eat healthy. Emphasis on protein/fruit/veggies--helps with munchies and any stomach issues. I eat a strict anti-inflammatory
- Take mints or butterscotch candy to suck on. The metal taste is real--it hits me towards the end and lasts for hours. It makes things taste gross-especially water. I eat/drink really clean, but I did treat myself to a Coke Zero after to still get liquid. Bland, comfort food will help too.
- Try to resist the urge to eat a lot of salty food, carbs and sugar after, even if you crave them. It won't help your overall health as it will make you retain even more water than normal from steroids and will wipe you out.
- Sleeping--dope up on benedryl, unisom or ask your neuro to prescribe a sleep aid. No joke, sleeping after isn't easy. The steroid is hard on your body and you need to rest.
- Consider having someone drive you home. I was really dizzy with kind off scewed perception the first day. I drove home and totally should not have! I drafted my teenage son to drive me home the next day.
- Take it easy after: Solu-Medrol kind of wipes me out. I am easily overwhelmed and need quiet time. I just went home and parked it in bed, read a book and sipped on metallic-tasting water before upgrading to a little Coke Zero. After 3-4 hours I was feeling normally again.
- Embrace the corpse look: It'll flush you white. I'm very fair-skinned with rosy undertones--think 50 shades of red. I kinda like the porcelain look I get after, but it freaks my family out, ha ha.
- Attitude: Be gentle on yourself. Remember that although Solu is fighting massive inflammation, and will bring you out of a relapse; it takes a toll on your body, so take it easy. My faith and attitude make a HUGE difference in managing the wonder of MS. Be super-positive, make jokes, let people help you out. This all sucks, but you'll make it through! I'm learning mindset is EVERYTHING! I also deal with situational depression as part of my MS, so focusing on the positive and creating healthy downtime activities is crucial for me. I enjoy time with my family, rest, read, even watch a Brit flick or two as I heal. Connect with God too (or some type of Zen/higher power). Find your peace, go outdoors, etc. Hang in there friends, this too shall pass! Godspeed and fight the good fight. Bear in mind that the side effects will pass!
Websites that helped me prep.
https://multiplesclerosis.net/living-with-ms/tips-for-an-easier-round-of-solumedrol/ Read this one in particular if you have stomach issues on the drug. I don't, but a lot of people do.
https://www.verywellhealth.com/solu-medrol-treatment-side-effects-and-tips-2440924 Great comprehensive list & more information of exactly how it's administered.
https://www.everydayhealth.com/columns/kim-life-with-multiple-sclerosis-ms/what-its-like-to-be-on-solumedrol/: Another MS patient's experience--different that mind, but still helpful.
https://www.verywellhealth.com/how-can-i-lose-prednisone-weight-gain-1942985 Good overview of the bloating/weight gain factor. I appreciated the reminder or what to--or not eat--as I am tapering down.
https://www.verywellhealth.com/how-can-i-lose-prednisone-weight-gain-1942985 Good overview of the bloating/weight gain factor. I appreciated the reminder or what to--or not eat--as I am tapering down.
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