Thanks for the donations yesterday! We’re now at $4890, just $110 from our MS Awareness week goal of reaching $5000 raised towards our $10,000 goal. Here’s the link to join our team or donate. Of course we’d love to exceed this goal!
Today’s topic is MS treatments, and it’s a bit of a long post, but I think an interesting one! In order to be treated, somone first has to be diagnosed. Once a diagnosis is made, the patient and their neurologist usually have to figure out the best course of treatment(s). Now, I’m going to step back a bit, as something that I didn’t mention in earlier posts is that there is more than one kind of MS. (Though it’s up for debate if it’s all one kind, just different severities and where you happen land upon the “progression spectrum” when you are diagnosed.)
Most people with MS are initially diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS), which means you might have a flare-up (attack on the CNS), then it resolves (the remitting part) and you may not even notice any symptoms. Then months or even years later, you get a relapse, followed by another remission, though this time it might leave some more lingering effects due to the CNS damage. This course of the disease is a series of relapses and remissions, and the more that occur, the more damage that is taking place to your CNS. The goal here is to reduce or eliminate these relapses so the person with MS goes on with their normal.
The other kind of MS are called progressive types - where you don’t have the remission phase and symptoms just continually worsen over time. It’s Primary Progressive if this is what you are first diagnosed with, Secondary Progressive if you first went through a relapsing-remitting phase. There are currently no FDA approved treatments for progressive MS, so this is where research dollars really can help!
Back to treatment of RRMS. I’ll start with the drug therapies. There are 12 FDA approved drugs for RRMS, two of which were approved in 2014. The majority of them are injectable, a few are delivered via infusion, and more recently, oral medications have become available. The first interferon treatment was approved in 1993. That’s really not that long ago! I won’t go into how all these work, but for the most part, because MS is an immune-mediated issue, the medications suppress the immune system in some way. There are also a lot of potential side-effects, so careful patient screening must be done to make sure the chosen treatment is first appropriate for the patient, and second, the side effects are tolerated.
Treating MS goes beyond just trying to modify the disease course. (The meds are often called disease modifying drugs - recall there is no cure at this time, just hope to slow down the progression.) Often the symptoms need to be treated as well to help with quality of life. Imagine if you had bladder control issues due to MS. You’d probably want to figure out a way to manage that a bit. Also if you have balance or muscle control issues, you might go to physical therapy to work on improving muscle coordination. Or if you were dealing with mood issues, you might see a counselor or therapist. Or if your speech was impacted, you’d visit a speech therapist. The list goes on! And I can’t forget to add that a good diet of real/whole foods and regular exercise also is a recommended addition to any other treatment, not to mention things like massage or acupuncture to help the body feel better.
Additionally, relapses are sometimes treated with high doses of steroids to help the person regain function more quickly. If you can’t see or can’t walk, it’s likely your doctor will get you on steroids (usually methyl-prednisolone) as soon as possible. What’s interesting is that it doesn’t change where you will end up in terms of symptoms, but rather gets you there faster.
You can hopefully see how MS is a complicated disease due to the effects of damage to the CNS, and the treatments can be complicated
Note from Nicole:
I’m on one of the new oral treatments called Gilenya. It’s got some side effects (higher blood pressure and it lowered my max heart rate, in addition to the “internal” ones I can’t see without a blood test, such as lowered white blood cell count and changes to liver function), but I hope it’s doing its job! With MS medication, you typically don’t know if it’s “working”, you just have to monitor the number of relapses you have and hope you don’t have as many (or any!)
To get on this medication, I had to go through a variety of tests to make sure I was a candidate, and being relatively young and otherwise healthy, all looked good. Then to start I had to do a “first dose observation,” where I spent over 6 hours in a contracted urgent care facility to make sure I didn’t have any adverse reactions to the medication. Because it affects the heart, they wanted to make sure my heart rate didn’t get too low and the electrical signals in my heart were still OK. So I got an EKG, swallowed the pill, and then sat in a room where the staff came in every hour to measure my pulse and blood pressure. I had another EKG before they sent me home. Pretty boring, so I invited friends to take shifts and hang out with me, and "borrowed" the lab coat that was hanging on the door!
So far all seems to be going relatively well, though for all you in my age group, I am a little slower due to the hip surgeries and lowered max heart rate. That’s my excuse anyway!