I keep getting questions about my infusions and some of them just prove to me that I need to do some better explaining about what the treatments are intended to do. I’m going to write it FAQ-style. Most of the following questions have been asked of us recently.
Q: Are you feeling better? Are the treatments working?
A: The short answer is – we can tell the treatments are working if nothing changes. The longer answer – the purpose of most (maybe all?) Disease Modifying Drugs (DMDs) used to treat MS is to slow or stop the progression of the disease. Left untreated, most people with MS will experience additional symptoms over time which will continue to affect their bodies. The DMD that I am on – administered via infusion – is intended to keep the disease from progressing. So if it is “working”, we will not really know until we continue to see no changes, no new symptoms.
Q: How much longer do you have to do these treatments?
A: Forever. Well, at least for as long as we (Alex, me, my doctor) feel that it is keeping me stable and keeping my disease from progressing. Which could be forever. When people go off their DMDs, they often see progression of the disease and return or worsening of symptoms. So I will be on this particular DMD for as long as it works for me (I am in contact with people who are on their 60th infusion). That’s why we called it a “long road”.
Q: What are the side effects of the infusions?
A: Obviously there is a list of side effects put out by the drug company, but this is what I usually experience: extreme tiredness for about a day after my infusion and usually worsening of the symptoms in my hands immediately after. We have learned that the best way to deal with the side effects if for me to schedule a “recovery” day for the day after my infusion. I stay home and just force myself to chill so I don’t get completely exhausted.
Q: What is the deal with the brain virus thing that you’ve mentioned before?
A: One of the side effects of Tysabri (the drug they administer during the infusion) is that it can “activate” a fatal, untreatable brain virus. About 50% of the population already have this virus, but because it is a relatively weak virus, your natural immune system supresses it. When you take Tysabri, it can weaken the part of the immune system that keeps this virus from becoming active. In the past, it was just a gamble when you choose to do the infusions. But now, there is a test to determine if you are a carrier for this brain virus. Luckily right now, I am not a carrier so there is no risk for me. However, you can convert to being a carrier at any time, so I will continue to be tested for it about every 6 months.
Q: How are you feeling?
A: I assume that this question is usually directed at my physical condition. (It is often followed by “You look great!”) MS is different for every person. In the past, before there were so many great treatment options, MS could leave people looking/feeling pretty debilitated. I think this is often what people expect when they haven’t seen me for a while. I feel pretty good. My two biggest symptoms are extreme fatigue which comes & goes (and is unrelated to sleep or other physical factors) and altered sensation in my hands. The best way to describe what is going on in my hands is that they feel like I went outside in the snow without mittens, built a snowman and then came back in – they are in this constant numb/tingly state that almost feels like they are thawing out, but it never goes away. Consequently, I have lost some dexterity and feeling. The severity of it fluctuates, so some days it is really bad (you’ll know when you get an email with tons of typos!) and other days they feel semi-ok…but never completely normal.
Q: Is that the only symptom? How bad does it get?
A: I’ve had 3 big relapses as well as smaller episodes of symptoms and of optic neuritis (problems with my vision). The last relapse was pretty bad. About 99% of the people in my life did not see that (which to be honest I am glad of) because it was bad enough that it kept me at home. I had so much numbness, tingling and affected sensation throughout most of my body that I couldn’t walk without looking like a VERY drunk person. I couldn’t safely go up & down the stairs in our home, I had pain and sensation that kept me from sleeping or being comfortable when I was awake. I had muscle spasms that made me jerk unexpectedly. I had such extreme fatigue that I spent most of those days sitting/laying down. The one day that we ventured out to go to Alex’s family day @ Boeing, I had to tour the factory in a wheelchair. Not fun, not pretty. Glad the meds are working!!
Q: Have you tried XYZ diet/treatment?
A: Maybe? We’ve looked into lots of different diets, treatments, new drugs, etc. I don’t mind a quick link to an article or reference to something you’ve heard about, but we have done our research. Lots of it. We have a great doc @ the Virginia Mason MS Clinic, we are up to date on new meds and new clinical trials for alternative treatments. We feel really confident that we have chosen a great team to partner with in my care and a great treatment that is doing what it is supposed to do – keep me in remission.
Q: How are the kids dealing with this?
A: Like kids. They don’t really have the “baggage” that a lot of us grown ups have about what MS means (or can mean) to a person. They did see me at my worst during the last relapse and it scared them. But they’ve also seen us be proactive and they are seeing that I am stable on the DMDs. We have been very honest with them all along, trying to explain the truth about what this diagnosis means without scaring them. For the most part, I think they don’t really “get” it. But that’s ok. They do get worried sometimes. They ask questions and we answer them honestly. And they are a huge help on my treatment days, they do see the importance behind the infusions and that the DMDs are keeping me in remission.
I hope that answers lots of questions. I’m happy to answer others you may have, leave them in the comments section and I’ll do my best to answer them.
A few links to great info about MS and about the specific DMD that I am taking: