Cimzia, Cimzia, and more Cimzia…

18 03 2011

I know you are all tired of hearing about Cimzia.

Especially if you don’t have Crohn’s, I’m sure a medicine isn’t that interesting.

It fascinates me though. It’s really the only thing that keeps me going and well.

I have one of those low normal temperatures, usually 97.9, and I’m super sensitive to changes in that. When it gets above 98 I start to feel sick and uncomfortable. I get achy when I hit 98.7, most people’s normal range.

So I take my shots on Tuesdays. After my surgery I can tell quickly when a flare is coming because I get a fever. On Tuesday (and the days preceding) my temp was 98.2. Wednesday it was 97.9. OVERNIGHT this stuff kicks in. It’s fabulous and weird and crazy. I don’t understand how the body works or how a drug like this works. I’ve done my research so I understand the premise of it but I don’t understand how overnight I could feel so different.

Basically this drug is amazing. I’m thinking about it because my brother is starting to have flares again and they are talking about putting him on Cimzia or Humira. In the past he’s had an allergic reaction to Remicaide which is in the same drug family so we’ve been really leery about putting him on something like this.

But the problem is for our disease there are literally no more options other than steroids, which, as our doctor says, “are just a bandaid.”

I get really passionate about this because I see our future. My disease has a history of responding well to things and then just having those meds lose effectiveness over time which leads me back to the dreaded steroids.

I don’t want to take steroids ever again. They make my face puffy. They make me angry and moody and I cry and scream and get so emotional about everything. They give me weird ass dreams and I’m convinced in the last few months that they made my heart race as well. I am not a fan. I would rather be on these hard-core medicines than those steroids. So we’ll see.

Hopefully I won’t need to worry about that. In a perfect world these meds will work for the rest of my life. They’ll discover new medicines and treatments and someday a cure and I can spend my days reminiscing about bad side effects and painful shots just like how I now think back about how awful that damn colon was.

But for that to happen we really need to keep raising awareness and raising money. I hate doing it. I hate begging for funds. I feel weird about it. But it’s too important not to. So do it. Just sayin.

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