IV Steroids a Multiple Sclerosis Treatment - a Home Infusion Experience
First Time is Frightening
Steroids, called Solu-Medrol, are delivered through an intravenous solution, to treat Multiple Sclerosis attacks, The treatment can be unsettling to say the least and down right petrifying to say the most. The first time experience is easily recalled to mind, whether it be for the sometimes comical aspects of the ordeal or for the more serious side effects of the treatment. Most PWMS (people with MS) have their first experience as a result of ON (Optic Neuritis). Others, like myself, had ON when it wasn't so commonly known as a symptom of possible MS, so my first experience with Solu-Medrol was as the result of a different type of MS attack.
I well remember the one and only time I had ON I couldn't see more than an arm's length or so in front of me. I was extremely bothered by sun light and my vision was very blurred. My doctor sent me to an ophthalmologist, but he couldn't find anything wrong during my eye examine, so he concluded I might have an eye infection and sent me home with some eye drops. When I eventually got better, I naturally contributed it to the medication and was glad the infection was gone. It wasn't until 10 or so years later that I learned it was Optic Neuritis and it cleared up on its own. The eye drops didn't accomplish anything, as there was never an infection.
Dosage Length Varies
Solu-Medrol can be used to hasten the recovery, not only for Optic Neuritis but other MS flare-ups as well. However, there are those who refuse to use such mega dose treatments of steroids, stating the studies that show a "flare" will usually and eventually go away on its own, given enough time. Therefore, if a person with MS hates the side-effects of steroids, or just can't tolerate them, they play the waiting came and allow the flare to go away of its own accord.
What is a Solu-Medrol Pulse
Solu-Medrol is the brand name for Methylprednisolene Sodium Succinate.It is a corticosteroid hormone used to reduce inflammation of the central nervous system and to quite an overactive autoimmune response. It is also used for countless other medical conditions, a list too long to mention in this article. In MS, It can be quite successful in decreasing the length of a flare-up and restoring a function MS has temporary taken away.
The dosage requirements varies depending on the severity of the attack. Your neurologist may order just a one-day pulse which means you will receive one gram of solu-medrol which equals one IV bag. This type of pulse is usually prescribed monthly. It is infused through a vein usually in your hand and can take as little as 45 minutes to as long as 2 hours depending on the drip speed.
I must confess, that I manually altered my drip speed to 45 minutes, it is not the setting used by medical professionals, but I chose it so that the contents would drip into my system much more quickly. I was only able to do this because I had home infusions, I didn't receive the drip in my doctor's office.
The next type of infusion is the 3-5 day pulse. The neurologist makes the determination according to how severe the attack is. Of course if your attack is very severe you can easily be prescribed a 7 or 8 day pulse or longer. The doctor gives you his recommendation, based on your neurological exam. On average though, people with relapsing/remitting MS receive a 3-5 day cycle.
A single dose equals 1 gram. That doesn't sound too bad does it? But consider it like this: 1 gram equals 1,000 milligrams. Any way you slice it, that's a lot of steroids pulsing through your body. Each day or cycle is 1,000 milligrams, during an average 3-day pulse you receive 3,000 milligrams of corticosteroid hormones. And lets not forget that after the main entrée is consumed, which may be topped off with an oral taper of Prednisone
The body can't just quit steroids cold turkey. The steroids take the place of your endocrine system, putting your functions to sleep. The steroids are controlling all the hormonal activity which means your own endocrine system has to gradually wake up once the massive amounts of IV steroids are completed. The day after your pulse treatment is concluded you begin taking the pills. If you are on a 6 day taper, for example, days 1-3 you might take 2 pills, day 4-6 you might take 1 pill. I've personally done pulses with no taper at all, and I've done steroids with a taper of varying amounts and varying number of days. It just depends on what your neurologist feels is best. Although I will add that most neurologist always give some sort of taper nowadays. The body's own systems are slowly awakened and try to kick themselves back in gear. It's hard work as the steroids really make the systems idle almost to the point of inactivity.The body's effort to recharge itself brings us to the dreaded CRASH! It's hard to generalize what the IV treatment and crash is like so I'll just try to describe my experience:
My fear of needles always makes even setting up the IV a stressful event. I opted for home infusion, which meant a nurse was sent out to my house and she put in the IV line and got my first bag going, then I did the rest. For me the pulses varied from just a one-day pulse, to a 3-day pulse.
Usually the night before the nurse arrived, the solu-medrol was delivered to me by a carrier employed by the home nursing provider. I refrigerated the contents and make sure it was at room temperature in time for the nurses arrival. The provider set up a day and time that my nurse and I agreed to.
Upon the nurses arrival, we went to work finding a vein that would cooperate. I always made sure to drink plenty of water to open up the veins and even lifted one-pound weights to aid in finding a plump suitable vein. I never watched the line actually being put in. I always looked away, took deep calming breathes and waited to hear those lovely words, "Ok, it's in!" Once the line is in place and taped, (I had it put in my left hand since I am right-handed.) The solu-medrol is placed on an IV pole raised to the correct height, set so that it drips at the predetermined speed. My nurse filled out the paper work, made sure everything was infusing smoothly and reviewed the procedure to follow after each infusion was over) and then she was on her way.
I guess about 10-15 minutes in, I developed a metallic taste, that stayed the duration of the IV and for much of the day after the IV is finished. Mints and lemon helped with that side effect.
Not too long after the infusion, once in a while even during the infusion, I could feel the symptom that was bothering me start to ease up. For example, if I was having trouble swallowing, I noticed almost instant improvement when I ate or drank something. That's not to say that all symptoms go away that quickly. When I had trouble walking, it took some time after the infusion and taper were over before I felt significant improvement in my legs. It was a more gradual type of improvement, not a quick fix as was the case with my choking problem.
The one thing I can say I noticed right away was the feeling of being hyperactive. Some feel anxious at this point, but that was never one of my side effects. Feeling VERY hyped almost manic certainly was, as my husband and anyone who tried to hold a normal conversation with me can testify too. I asked and answered a question almost simultaneously. No one could get a word in because I was my own conversationalist. I really could have just talked to myself and answered myself, there would have been no discernible difference. At a certain point you notice your talking WAY to fast and WAY to much, but you can't control it. The only time you and your loved ones get any relief is when THEY left me to my own hyper self. My mom would just let me ramble and when I took a breathe she would make a short reply like, "uh hum" or "hmmm" My sister would be trying hard not to laugh as I would dash from one topic to another, barely giving her any time to respond. Or when I asked her, "Am I talking too fast? Am I? I feel like I am? Am I?" She would laughingly reply, "yeah, a little." My poor husband got NO relief. I talked from the time he walked in the door until the time he left the next morning. Didn't matter if it was midnight or 1:00 am, I was always ready to pick up where I left off.
Another side effect of all those steroids is insomnia. It is impossible to sleep with such a high level of hormones in the blood stream. I was directed to take one and a half of my normal sleeping pill, just to get 4 hours worth of sleep.Those who do not take sleeping aids will suffer with insomnia and exhaustion, which will continue after the treatment is completed.
Stomach Lining Concerns and Blood Sugar Levels
Solu-medrol and the taper are also rough on the stomach lining. Zantac is now prescribed right along with the steroids.
Long time use of steroids often raises raises blood sugar levels, you must have your bone density tested to make sure there is no bone loss and it raises your blood pressure as well. Weak teeth can also be problematic.
There was a time when I took solu-medrol for a year straight!I did one-day monthly pulses. It worked great for me especially with my cognitive issues. I had no flare-ups during that time and thought I would just continue it as my chosen course of treatment. Then I found out the horrible news of the dangers of long time use. As a result of steroids I developed a weight problem (another side effect) which pushed me over the acceptable level of blood sugar, meaning I am now a diabetic although it is being controlled by medication. I also have high blood pressure (also controlled by meds) and high cholesterol (controlled) Needless to say I can only hope I can be steroid-free as long as possible. As much good as it did, the harmfulness of steroids seems just as bad.
Relapsing/remitting MS can stabilize making big flares rare, especially if you take care of yourself and know your body and how it best handles MS.
Even with the side effects, the crash and withdrawal, steroids have always helped me through a nasty attack. With all the problems I have developed as the result of the help I received from the steroids, I would still go back to them if I had to. That's just how bad the MS attacks are.
My Latest 3- Day Infusion
- My 3 Day Steroid Treatment for MS-Part 1
This 4-part series, chronicles my latest 3-day Infusion, which occurred 06/09. To understand how each infusion affected me, including the crash, please click the links. At the bottom of the articles will be a link to the next article in the series.
- My 3 Day Steroid Treatment for MS - Part 2
- My 3 Day Steroid Treatment - Part 3
- My 3 Day Steroid Treatment - Part 4
- Solu-Medrol Side Effects l
Information taken from about.com from a MSer who authored the article and tips