Tuesday, March 8, 2011

Yesterday

First of all, the plasmapheresis treatment went smoothly. Hallelujah! I was a teeny bit nervous because it's been a while, and I always have a bit of anxiety. You'd think I'd be used to having this stupid treatments seeing as how I've had a brazillion. But the needles went in perfectly, didn't even FEEL one of them...which is amazing. Ran smoothly, and got outta there in about an hour and 15 minutes.

Then we went to see Dr. Teener in the EMG lab after the treatment. I really had wanted to see him BEFORE the treatment, because I was so wiped out afterwards....I felt like my brain was all fuzzy and I wanted to be thinking very clearly.

We talked about the Rituximab, and we (the doc, me and Doug) all seemed to be on the same page. The possibility of PML is really remote. The biggest concern is actually pneumonia! They usually give patients who get Rituximab Dapsone, which is a low grade antibiotic with a sulfa base to protect from that. Now Dr. Teener knows I'm allergic to sulfa, so he says, "You'll probably get a warning from the pharmacist but... " So before he continues I say, "My sulfa allergy leads to anaphylactic shock." He just closed his eyes. I'm like, "Yup, I took one pill, and 3 hours later they were stabbing me with epinephrine! Does that REALLY surprise you?" My case is the 2nd most difficult case of MG he's ever had....I wonder if I'm starting to move up in rank!

Anyway. Now we are waiting on a call from the neuro for a date for my first infusion. I will have one treatment a week for 4 weeks, then hopefully one treatment every 6 months. Many people start feeling better after the first month. Some it takes a bit longer. I get to cut my CellCept in half the week before my first treatment, and the prednisone goes down to 5 every day 2 days before. This is to reduce the risk of pneumonia (a little). And if I get pneumonia, they will aggressively treat it right away, and I'll be fine.

SO. No more pills to try, no more "band aids" as a friend of mine put it. Time to pull the trigger. I'm ready. I'm scared, but I'm really ready. I asked God to make it VERY clear to me (sometimes I need a good 2 x 4 over the head to "hear" Him) if I was NOT to go through with this. Got no such thing, so I'm going. Kind of like with the cyclosporine, I KNEW it wasn't going to work. I hung on longer than I should have because several people wanted me to, but I KNEW that I KNEW it wasn't the right thing.

Rituximab is my shot at remission folks. Might be a month, 6 months, a year, I don't know. But remission. Here's hoping!!

6 comments:

LRHG said...

Can you "simply" get the pneumonia vaccine? I know it's recommended anyway for diabetics and those with other autoimmune disorders??

Margaret said...

I hope it works for you because I know finding the right drug is a great feeling!

Karen Mortensen said...

All is sounding good. I hope this is your answer.
I love your new layout. So bright and cheery.

Rachel said...

Glad to hear PLEX went well! Rituximab sounds very promising, remission of any length will be a blessing. As always sending good thoughts and prayers your way!

Patty Ann said...

Oh Kerri!! My fingers and my toes are all crossed, just hoping this will be the thing you want and need it to be. I am also keeping you in my heart and prayers. You have done everything you can on your own. Now you just have to turn it all over to Him and trust.

Kerri said...

Leah, I CANNOT have vaccinations. No tetnus, (however the heck you spell it...nothing. I got the flu shot in November of 2008 and my health has been completely downhill since then. I got SPOTS from the flu shot. From my elbows to my hands, and knees to my feet. Big, red, flat spots that didn't itch, but hurt like bruises. They did biopsies and couldn't come up with anything...then I got reactive arthritis...in. every. joint. Never, ever, ever again will I have flu or pnuemonia shots. But thanks for thinkin' of me!