Solu-Medrol for MS Is Not for the Faint of Heart
Multiple sclerosis (MS) is a struggle on many fronts. I am finally on the tail end of recovery from a recent relapse and, let me tell you, I am so relieved to be done with the IV steroids and back into the land of the living.
MS is no joke. Even when you have a more positive disease course, it is very likely that you have had to experience the IV steroids at least once.
IV steroids are not fun. They are not easy. In fact, I personally find them to be the hardest part of having MS.
This might be a good article to share with your family and friends because I plan on talking about all of it. Solu-Medrol is my neurologist’s drug of choice and it is not a drug for the faint of heart. If you want the people in your life to understand your experience, send them this!
What Is the Course of Treatment?
Solu-Medrol, for those who don’t know, is an intravenous drug infusion that neurologists use to halt the progression of relapses.
The treatment attempts to reduce inflammation and suppress immunity activity in people experiencing active MS disease progression. The patient will normally sit through three to five days of hour-long infusions.
Solu-Medrol is a strong drug, and the impact of it on your body can be very taxing. I believe the medicine is worth the struggle. It works for me like a charm, but the benefits come at a cost.
You will begin to feel the drug’s effects almost immediately. The first sign for me is the terrible taste in my mouth.
Fortunately, my neurologist keeps a bucket full of candy on hand to help people cope. The taste will last for the entire time you sit through the infusion and for a couple of hours after.
For me, day one is the easiest. I feel relieved that my relapse is getting the necessary treatment and I honestly don’t really feel the negative effects of the meds yet.
I am a hard stick, so my veins tend to get bruised up, but if you want you can have them leave the port in your arm for the length of the treatment so you can avoid getting stuck every day.
I always prefer to have the needle removed daily. I don’t like to have to think about the treatment when I am out of the office, so I end up with plenty of bruises by the time the week is done.
Day two feels more like a routine and there is some joy that the treatment days are ticking off. It is important to start drinking lots of water by day two, if you haven’t started already — trust me, your body will be happier for it.
Water is your friend. It will help prevent cramping and also aid in flushing the drug out of your system.
The treatment hit me harder this time than it has in the past. I didn’t drink enough water and I ended up with leg cramps that sent me to the floor crying and screaming.
I never knew my muscles could contract like that. I’m telling you, childbirth was easier.
Day three was wonderful because I knew I was free to go home and heal. I was done with the needles and my body was already responding to the treatment.
I always get MS hug symptoms — I still and always will hate that misnomer — and the treatment works fast in relieving the feelings of claws grabbing my ribs and digging themselves upwards towards my diaphragm.
Still, I have been through the IV steroids before and I know this is only the beginning of the drug’s side effects.
What Are Some of the Side Effects?
I don’t know about everyone else, but I have a tendency to encounter a lot of side effects from both having the drug in my system and also going through the physical withdrawal of having it leave. I experienced:
- Ravenous hunger and thirst
- Water retention
- Weight gain
- Anxiety and depression
- Blurred vision
- Frequent urination
- Itchy skin
- Hair loss
Some of these side effects are easier to manage than the others, but they are all hard nonetheless.
Recovering from an MS relapse is intensive work and struggle. There are many days that feel hopeless and impossible.
I would look in the mirror and not recognize the person I was looking at. The entire experience is demoralizing and scary. I always know that it is coming, but I never get used to the reality of it all.
Taking It Day by Day
Each day is a different struggle to find normalcy, and there are many days when it is easy to forget the person you were before it all began.
Recovering from a relapse is not just a struggle against the damage the disease has done; it is also equally (if not more so) a struggle against the damage the drug fighting the disease has done.
How do we move through life with our heads up, knowing we can be knocked down into the abyss again? How do we climb back out each time?
- We take it one day at a time.
- We take the time to remind ourselves as often as necessary who we really are.
- We remember who we want to be.
- We carefully construct our lives, curating the moments and choices that will forge our paths.
- We look past the moment that is and reach forward to grip the moments that will be.
- We live lives of choice with decisiveness and self-motivated direction.
- We seek out people who will see us — really see us — in all of our moments, the good and the bad.
- We surround ourselves with support and kindness.
- We use all of the love and compassion we have been given to recharge and give back in kind.
- We wake up every morning with the clear understanding that no one is promised another day.
- We live each day that we have as a gift.
- We go to sleep every night grateful for what we still have.
If we can hold onto these tenants, we can deal with the hardest days, the darkest nights, and the scariest moments. Through the pain of the drugs, the moments of joy and beauty continue to rain down upon us if we are willing to drink them in.