If you have multiple sclerosis, it just might be possible that you’ve also experienced the dreaded IVSM. IVSM = Intravenous Solumedrol, a treatment which involves really high doses of glucocorticoid steroids, specifically Methylprednisolone.
Solumedrol, a potent anti-inflammatory steroid, is used as an emergency treatment for acute exacerbations. It does not affect the course of the disease, but it does shorten the length of a relapse by putting a stop to ongoing inflammation and closing the blood-brain barrier.
If your relapses have not been too severe, maybe you’ve not had the ‘pleasure’ of IVSM so far in your MS career. I applaud you in that. But if you do have to undergo the infusion, hopefully these tips will help make your experience more tolerable.
In 2005, I was in the process of being officially diagnosed. After the results of my Lumbar Puncture came back, I was called into the neurology center to begin a 5-day adventure into SolyWorld. One of the other MS patients already hooked up mentioned that it was like “PMS in a bag” - a description he and his wife had lovingly coined.
1. Shy Veins. Since I have small and hard-to-find veins, I take care to be well hydrated. In order to get a really good IV line started, the nurse uses a heating pad to further plump up those veins. Thank you, nurse Janice. Also, protect your IV line by not getting it wet.
2. Metallic Taste. Solumedrol causes a really yucky, penny-like taste in the mouth. I recommend sucking on hard candies and mints during the infusion session. My personal favorites are Jolly Ranchers and LifeSaver Mints. Don’t leave home without them.
3. Avoid Headache. If you get a headache during or after the infusion, ask the nurse to slow down the drip on following days. For me the 60-minute drip was too fast and found that a 90-minute drip avoided a pounding headache later in the day.
4. Protect your Stomach. Solumedrol causes increased stomach acid production which can cause severe heartburn and gastritis. Rather than let this excess acid eat away at your stomach lining, take Zantac as a precautionary measure before each meal and each infusion.
5. The Cookie Monster. Steroids will make you hungry! Maybe even create an urge to eat the cardboard boxes which house the cookies. Be careful. Solumedrol causes water retention, so avoid salty and sugary foods. It can cause increased blood sugar levels while it depletes potassium levels. Increase potassium-rich foods, such as bananas, apricots, lima beans, beets, and baked potato with the skin.
6. Anxiety. Many folks report feeling a surge of energy, so much so that laundry gets done, the house gets cleaned, etc. Be careful. The steroids are putting a huge strain on your body and you need to rest and recuperate. It’s tempting to be an Energizer Bunny for a few days, but you’ll just end up paying for it later.
7. Insomnia. Each time I’ve undergone a round of IVSM, my heart wants to pound right out of my chest and I can’t sleep. Rather than suffer with less than 3 hours of shut-eye each night while on the drip, I’ve taken advantage of sleep medications such as Ambien and Rozerem.
8. Mood Swings. Remember the MS patient who called IVSM - PMS in a bag? Mood swings and increased irritability, ok - RAGE, are very common side effects during treatment. In addition, I usually feel cognitively deficient, almost downright dumb. This is NOT the time to make big decisions, but a good time to avoid confrontation.
9. Depression. Corticosteroids may aggravate existing emotional instability or psychotic tendencies. If you suffer from depression, keep a close eye on your mood. Knowing in advance that your depression might become exaggerated helps tremendously when you feel the tug of that dark hole. Reassure yourself that it’s just a temporary condition and will pass.
10. Weakened Immunity. Solumedrol is a powerful immunosuppressant. Your body will be vulnerable to infection during and after treatment. Avoid contact with people who have symptoms of a cold or virus and do not receive any vaccinations. If you do begin to exhibit signs of infection, such as increased fever, chills, rash, and respiratory distress, contact your doctor immediately.
These are just some of the things I’ve learned during multiple 5-day rounds of IV Solumedrol. With experience comes knowledge. What are some of your tips for a smooth Soly ride?
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.