My 3 Day Steroid Treatment for MS-Part 1
If you are reading this, it is probably because you are in dire need of information about what it will be like to be put on high-dose steroids for a 3-5 day period of time. It may be your first time receiving an IV pulse and the thought either terrifies you and/or makes you feel relieved at the thought of ending a major attack or flare-up of your MS. Rest assured you've come to the right place for the information you seek, so please keep reading.
Back in the day, when one had to go to the library or send away for information from the National MS Society, I would have killed to be able to do a search and find immediate answers to my questions. Now with the proliferation of the Internet, this knowledge is at your fingertips and immediate answers are provided.
This article is the first in a series of articles chronicling my steroid treatment from my first realizaton I was in a major flare, to my visit and examination with my neurologist, to each consecutive day of my 3-day pulse. The series will end with a detailed description of what the inevitable steroid crash feels like, when it first hits.
So without further delay, I will start with the realization that I was experiencing a major flare-up that could no longer be ignored.
In retrospect, I concede it took too long for me to realize my MS was getting out of hand. Its what can happen to you when you get used to being chronically ill. I thought I just needed to play the waiting game while resting and doing all the common sense things I've learned to do to cope with MS, and eventually I would get back to my "normal" level. Most of the time that philosophy serves me well, but then there's that small percentage of the time when nothing you do serves you well and you must consider bringing in the big guns. I have symptoms that now require the big guns to get my body to quit attacking me.
What are those symptoms and what differentiates major flare-ups from minor flare-ups. I have written in detail, about what my major symptoms currently are. You can read about them here. Keeping in mind this is only what I experience, and everyone's MS behaves differently, you still may be able to relate to one of my symptoms in evaluating your particular needs.
Don't forget to determine whether your symptoms are what is called a pseudo flare or the real thing, as well. That article is also available, just click this link
If after analyzing your situation you feel you may be in need of further assistance, then you and I are walking in the same tracks. I was able to take advantage of a cancelled appointment and got in to see my neurologist, June 11, '09. I suppose it was obvious to him that I was in the midst of a flare, because he hardly took any time examining me. I was afraid he would want me to jump on one leg, or do the heel-to-toe "sobriety" test and I was prepared to tell him I knew I wasn't up to even attempting it.
Instead, he was very gentle, told me to remain seated in the chair so that I wouldn't have to use my energy getting on the exam table, and then did only the most necessary tests to determine my level of weakness. He even put my shoes on for me after examining my reflexes. I was shocked and thought what a kind and gentle man my doctor is. There just aren't too many doctors who are true gentlemen today. I think you have to be very humble, a quality most doctors do not possess.
He told me he was very concerned about the progression of my MS and reminded me that when I do flare-up, the same attacks keep occurring and that he was afraid that my legs might suddenly get to the point where they are attacked and they don't recover. This is one of my biggest fears too. You can read about it in more detail, if you'd like in my article about what scares me most.
Reluctantly, I decided to make a major change with my MS therapy.
- Copaxone and my Needle Phobia Explored
You can read all about Copaxone, as I remember it and my needle phobia. I don't believe my fear of needles will ever go away, but I do have a basic know-how of what it takes to just do it, no matter how afraid I am. Once again I will rely on that.
Back To Copaxone
So it is back to Copaxone, sticking myself every single day with a needle, only one of my biggest fears in the world!
After my 3-day infusion is completed, I will have to meet with a nurse from Copaxone, in my home, and go over how to self-administer the injection and if memory serves, I will give myself the first injection in her presence.
My neurologist assured me that all the problems I had before with Copaxone will return, so I'm not promising how long I will stay on it, but I'll do my best and stick with it as long as I can. For now, I'm more concerned with setting up the Solu-Medrol. I'll deal with my needle phobia afterward.
Because I've had so many pulses in the last 16 years, I can request the home infusion. That means the Solu-Medrol is delivered to me along with all the paperwork that must be signed. I refrigerate the IVs and await the visit of the nurse. In this case I will be seeing the same nurse who has set up the infusions for me since around 2002. It will be good to see her again, since my last infusion goes back to 2005 or so.
I like to receive the infusions early in the morning, but with the very first one, it can take a little longer to receive depending on the nurses other appointments. I will therefore be receiving my first infusion between 1:00 and 2:00 pm today. NO SLEEP FOR ME TONIGHT, I imagine.
New Shape and Size
I was surprised when I was informed that the steroids where now available in a small ball instead of a long bag. With the ball there is no longer any need to lug a IV pole around with you. Apparently I can easily carry it around with me. I don't quite understand how that will allow the IV to drip, but guess I'll find out in a little while.
Part 1 in a Nutshell
So, in summary, Part 1 consists of identifying the severity of a flare; setting up an appointment with the neurologist to determine whether steroids are needed; getting the proper authorization to the home infusion facility; (faxing a prescription to them) receiving delivery of the infusion supplies and paperwork; taking out the solution at least 30 minutes before the nurse arrives and finally, putting in the line and starting the IV.
Next, Part 2 will describe the setting up process with the nurse and the effects felt once the steroids hit the bloodstream.