Thursday, December 3, 2015

New Treatments, New Hopes

So, a while back I promised you a blog about why I'm feeling so down lately. Then France happened, and the Syrian refugees, and I just haven't had the energy to spare to write anything else of real significance. 

A lot has been happening. You might remember that back in June, I told you that Matthew was being put back on Tysabri for his MS. The same Tysabri that could potentially cause him to develop PML (progressive multifocal leukoencephalopathy), which could potentially kill him. In January 2013 they found antibodies for it in his blood and stopped the Tysabri treatments immediately. This year, after no other medicines were effectively treating the MS, his doctor made the decision to try Tysabri one more time.

Well, between June and October the amount of antibodies in his blood went up times five.

Times FIVE.

That's huge.

He was immediately taken off Tysabri again, and his doctor said he will never, never, NEVER be put on it again. The problem then was, what medicine COULD he be given? Tysabri is one of the heavy hitters, and we'd already seen that anything less was ineffective for Matthew. When he takes the weaker medicines, he might as well not be taking anything, but with horrible side effects.

So we settled on a Very New Drug called Rituximab. It's a twice-yearly infusion, although initially he'll get two doses two weeks apart.  We went in November 24 for him to get his first dose, and we were there from 8:00 a.m. until 4:30 p.m.  That is a LONG day.  Midway through he started to get bad chills, nausea, and dizziness, so they paused it until the symptoms went away.

Being Matthew, he insisted on going to work anyway that evening.  He would be fine, he said.  So I dropped him off about 6:30; he said to pick him up at 11:00.  Well, about 9:15 I got a call saying to come and pick him up.  I set off (it's a half hour drive), and when I was almost there, he called again saying I'd need to take him to Emergency.

Chills, nausea, dizziness--yep; it had all come back.  The ER staff gave him medicine which got rid of the symptoms and sent us home.  He's been okay since, except for one more short bout of chills the next day.  Other than that there haven't been any problems that we've noticed, but his doctor said she wants to meet with him tomorrow.  He's having another infusion Tuesday, so this time they're going to take more precautions ahead of time so hopefully he won't get the nasty side effects.

I am tired.  I am so unutterably weary.  Life is weighing heavily on me with medical and financial concerns, and last night I received even more medical concerns.  Some days it's all I can do to get out of bed and face the day.  I want to hide in a cave somewhere and pretend the world doesn't exist.

Since that's not an option, thankfully I have good friends who bear me up.  I feel so very alone most of the time, and when they come over it's like light and sunshine entering my house.  I don't know how I'd manage without them.