Tuesday, April 01, 2008

the "neutralizing antibodies"!!!

A month of weirdness.

At last month's Tysabri infusion, I asked to skip the Benadryl, as I had done the month before. They are ok with that. I noticed the next day that I didn't have my normal energetic reaction, and felt like crap on a continuing basis all month. Developed a bladder infection, and had an MS flare-up start in full force a few weeks ago.

I've been taking Tysabri for 8 or 9 months, and this is my first flare-up. Kind of a bummer, though I do appreciate the good times. Yesterday, the MS clinic called and said they thought maybe I was experiencing the dreaded "neutralizing antibodies". Some Star Trek thing. So instead of having my next infusion tomorrow, I'm going down to chat and get blood tests done. I'm even wondering if my side effect of low appetite and mild nausea has been related to that.

I'm a little irked because somehow I didn't even know this was an option. I knew you could have an allergic reaction, but didn't know that the development of antibodies would trigger a relapse.

Not sure what to hope for or not to hope for. If the antibodies are a recurrent risk with each infusion, I think I'm probably out. I don't have to decide right now, so I'm trying not to.

At church on Sunday some guy came up to me and told me how he has "cured" people of MS using DHEA and other supplements. I had my normal "fuck off and die" reaction, but, it was church, so I was kind. He told me that the MS drugs are "the worst thing you can do.". I get pissed off when people get all negative about whatever I am doing, especially when it has been working for me. It's weird that 24 hours later, I find out maybe there is a problem with T. And, I did buy a bottle of DHEA/Vitamin D a few months ago. Might go dig that up....I plan to ask Rae about it tomorrow at the MS clinic. Surely if there was decent research they would be recommending it to patients?

and stop calling me Shirley.

So, I might be switching from John Corboy, "i play a doctor on TV!"* to a guy who works out of a van down by the river!

Stay tuned.

*just a joke. I love Dr. Corboy.


Amy said...

I may have commented here before, but if I didn't, "Hi, I'm Amy."
I totally hear you about the herb peddler.
Maybe it works. Maybe bee stings work. Maybe a combination of gasoline and baking soda rubbed into my scalp would work.
And, at church! That's where I hear about most of it.
Sorry about the T. That just stinks. Thank you for posting like you do. It's good to get some perspective.

CC said...

I have been tested for neutralizing antibodies once and have been told not to test for them again. If you test positive it doesn't mean that Tysabri is not working. From what I understand there are different levels of antibodies. That being said, you can test positive and continue to take Tysabri (unlike Interferons). The negative is that if you do test positive, your insurance company will likely not pay for future infusions. Email me if you want more information. Hope all goes well!!

trrish said...

Hi Amy- nice to hear from you. Your blog is entertaining :-).

I get pissy because I have tried a lot of the things, like diet and all that and still have had relapses. I figure if I'm still going to have relapses, I get to eat more than vegetables.

thanks for commenting,


trrish said...

hi Courtney,

Thanks for the comment. I remember you had that reaction. Also, you had a flare-up a little while ago, too, didn't you?

My appointment today was somewhat clarifying. Had an immediate MRI, got set up for the NAB test (they come to your house?) and also will do three days of steroids. I usually don't do the steroids because they are so, so, annoying. But I'd really like to know if I can get better since it's been about a month.

thanks for commenting. I find it helpful to keep up with everyone else's progress, so I'm glad you're blogging too.