My favorite neuro nurse, Patrice, preparing my Mabthera infusion at Danderydssjukhus, Stockholm. Since my last post in November, 2013, I’ve had 4 Mabthera infusions to date, spaced out every six months. And guess what? I haven’t had a relapse since! In between the infusions, I changed boyfriends and apartments, and while the breakup was a long and painful process (we were together for almost...
My office for today. Worked during the infusion. Here in the Nordics, when a patient is at risk for PML and can no longer continue Tysabri, the next line in medication is MabThera, at least that’s what my neurologist said. Manufactured by Roche, MabThera (rituximab) is actually used to treat non-Hodgkin’s lymphoma (NHL) and chronic lymphocytic leukaemia (CLL). MabThera is a chimeric monoclonal antibody...
And so it with great sadness that I must end Tysabri. I’ve been JCV positive from the beginning of my treatment January this year, and my latest bloodwork showed 1.7 (whatever that is) of antibodies. The threshold is 2, I think. I felt awesome all these 9 months I’ve been on it, the most normal I’ve ever been since I was diagnosed. I even...
This lovely place, located at the southern tip of Sweden, where from the beach you can see the Malmö bridge to Copenhagen, induces sleep. We were here earlier for midsummer with our good friends, after just arriving in Sweden for two days. We had barely unpacked our massive suitcases, we were off again after being in the Philippines for 2 months. Now, as our...
Above pic: My name, Althea, in runic form. At the National Museum Day 3 started out well. We had about 4 hours left from our ticket, and got on the hop-on-hop-off bus this time, heading for the palaces and planned to culminate it at free-town Christiania. The first stop was Amelienborg Castle, the Danish family’s royal residence in the winter. Amalienborg was originally built...
We had a late start on Day 2 in Copenhagen. We had a rough night and had a hard time sleeping because of the really soft bed (where you literally sink), it was somewhat warm and had to open the windows, and got woken up by various street sounds of cars, yelling, drunk people passing by, and of noisy construction early in the morning....
Every summer, I always travel elsewhere for my birthday (I’m a Leo, born July 25th. Rawr.). However, due to my MS, I’ve been avoiding the heat like a vampire, so I decided to stay and fully experience the onset of spring and the Swedish summer. I returned from the Philippines just last June and oh boy, it has been one packed summer. I’m so...
Today is Tysabri #3, or infusion day as I call it and I have an hour to kill. What to do? Candy Crush Saga, of course. I was pretty anxious when I met my neurologist this morning, fearing for bad news with the latest MRI scan. Thankfully, he was nothing but all smiles, pleased at my progress. I’m 99% normal, I said. I told...
Just finished my second Tysabri infusion and I am just now under observation for an hour for side effects. It took less than 10 minutes to set me up. It’s such a breeze now that I have a port-a-cath. My neurologist dropped by as I was starting and he told me I’m JC-positive. I was hoping for the opposite but what can you do....
So it’s been a while since my last post. I’ve been wanting to document the whole relapse but got busy at getting better instead. I am feeling 95% myself again, sans for this numb and tingling sensation left on my fingertips. Would love to continue physical therapy but it has been insanely cold that I’d rather stay indoors. My port-a-cath has been bothering me....
Me, lying there with the right half of my body numb and stiff: “How can you love me like this?” He gives me a kiss on my numb right cheek. His beard felt like sandpaper grating against my skin. “Because I love you before this.” — Above photo taken from the Kunsthistoriches Museum, Vienna,...