I have highly active relapsing remitting MS diagnosed in March 2016. During this time I have postponed treatment to have a baby. Baby has now arrived & it’s time for me to select a treatment. However I have been weighing up the pros & cons of the treatments for Tysabri & Lemtrada and to be honest I am currently thinking what is the point in taking a significantly high risk drug to suppress/treat a potential relapses for 1-5 years when I can quite easily manage/ treat a relapse/episode myself with either pain relief or steroids. Why take the risk? Can I ask how you evaluated your treatment options? Ideally I would love to speak to someone in a similar boat to me to ensure I have explored every angle before I put a very hard core drug in my body.
Currently I am 3 months post partum & my ms flair ups are gradually increasing- almost every night when I wake to use the bathroom my feet feel tired & heavy almost like I have been walking on them all night. I am also experiencing painful achy legs every few days which cannot be treated with pain relief. During my pregnancy I had a significant relapse at the start and I chose not to take the steroids- I was extremely fatigued & slept 20-22 hours of the day, I also had severe dizziness. I was absolutely fine during the 2nd & 3rd trimester and I actually forgot I had MS. Pre pregnancy I had a major relapse which led to my diagnosis this lasted 2 months and then I had about 2-3 mini episodes before I became pregnant. Episodes ranged from blurry vision to ringing in the ears, to feeling like someone was pulling on my hair from the back, vibrations & tingles in my fingers & toes & sporadic days of extreme fatigue (approx 3-4 days over 6 months)
I guess I am trying to figure out if I am better off staying as I am and deal with the relapses as and when they come and also deal with any disability that may arise (none currently) or risk getting PML on Tysabri- I am JCV positive, or risk getting thyroid,kidney or internal bleeding disorders on Lemtrada which are all treatable but at least I don’t have a risk of dying which I am at risk of on Tysabri. Or I stay as I am! Decisions decisions. How did you evaluate your options?