Interactive Website Explaining MS

I could not help but share this! This provides and interactive experience regarding a healthy person and one with MS. Please visit!

 http://www.understandingmultiplesclerosis.org/

The Road to Oral Medications Approved to Treat MS

Since being diagnosed with MS almost seven years ago, I've had my fair share of playing the guinea pig with MS therapies. 

The first medication I was on was Avonex. This nice little treat of an injection (sense the sarcasm) was administered once a week subcutaneously. The side effects were immense and included nausea, vomiting, headaches, rashes, hives, delusions, dizziness, fever, chills, exhaustion...you name it, and I'm certain it was there. However, I pushed forward with the medication hoping it would work. After my seventh hospital stay in a year and a half and test results revealing the progression of the disease had not slowed, I was taken off of Avonex.


Hooray?


No.


After Avonex, I was given 3,000 units of Solu-Medrol once a month. Told that this medication would give me the energy needed to live a relatively "normal" life ultimately meant that, again, my doctors were trying a cocktail of medication and hoping something would work. The taste alone was enough to make things awful. The metallic, rancid taste left in my mouth for hours after each infusion was horrible. The blisters inside my mouth were worse. My vision was damaged. I began losing hair. I gained weight. I had absolutely no energy. Horrible mood swings. Sigh. You name it, and I'm sure I experienced it. At my request, I was taken off of the medication.


Relief?


Somewhat.


The next medication, the one that would eventually become a security blanket to me for nearly five years was Rebif. An injection self-administered three times a week worked - in the beginning. However, the side-effects became more apparent after the first year. Hives. Redness. Swelling. Nausea. Vomiting. Headaches. Chills. Fever.


Here we go again.


However, I pushed forward. It wasn't until year four that my stomach (the area I administered the shot) had become a breeding ground for infections. I developed cellulitis which is a reaction of the cells under the skin dying and forming large, very hard, very painful blisters. My body started rejecting the medication resulting in me having to push on the injection site for at least fifteen minutes just to get it to stay under the skin long enough to be absorbed by the tissue. Unfortunately, now, my abdomen will be forever scarred from the agony I've placed my body under for so long. Permanent bruising, dimpling, scars, and red marks blotch my stomach making it incredibly difficult to look at myself in the mirror. It wasn't until I started developing other side effects - yellowing of the skin and eyes, severe bruising, severe nausea, awful abdominal pain - that my doctor decided it was time to run a series of tests to see what was going on in my body. A liver biopsy and string of blood tests revealed that the medication had damaged my liver. I decided to take myself off of MS therapy almost a year ago so I could live as normal of a life as possible. It almost seems like a waiting game now.


Will I wake tomorrow able to feel my legs? If I close my eyes, when I open them, will I still be able to see? Will I be able to feel the touch of my boyfriend? Will my college degree be of any assistance when I've lost cognitive function?


Terrifying, I know.


So, now what?


Two oral medications have been FDA approved, and are available for use.


Gilenya is proven to reduce relapses and delay disability progression in patients with relapsing forms of MS. Available in 0.5 mg capsules, this medication is said to reduce relapses by 80% when compared to a placebo and by 52% when compared with interferon-beta-1a. With any medication, there are risks. Gilenya has a risk of bradycardia which is when the heart rate increases rapidly. Physicians are instructed to monitor patients six hours after the first dose to look for bradycardia. An increase in infections, diarrhea, back pain, headaches, and elevated transaminases have been reported, as well.


Aubagio is the most recent medication to be approved. Administered orally once-a-day, it has been said that those on the medication had a 30% lower rate of symptom relapse compared to placebos. Common side-effects include diarrhea, nausea, and hair loss.


Knowing that I will, one day, have to be placed on an MS therapy to live a quality life, I hope my options point to the oral medications. However, until the medications have passed their risk evaluations (typically, five years), taking the medication(s) may be an option.


For those newly diagnosed with MS, the best advice I can give is to be an advocate of your own health. Coupled with the information you receive from your doctor, you need to understand the disease and what it is doing to your body. Only you know what is working and what is not working. Only you know if you feel right while on the medication. Ultimately, only you can decide what is best for you.


Do your research. It's a scary, unpredictable world when enduring MS. The more knowledge you have, the better off you'll be. Never be afraid to ask questions. Ever. The more knowledge you possess, the more powerful you'll be. Sadly, my lack of knowledge and avoidance of asking questions or admitting I was in pain resulted in damage to my body that I cannot reverse. Having MS doesn’t mean that we have to lay down and allow the disease to take over. Having MS means that we are strong, courageous, and powerful beyond measure. Perhaps, these new oral medications will be the beginning of lives so many believed to be lost?