The Beginning of an RA Clinical Trial Journey

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An RA clinical trial coordinator tests my talents

I’ve always had some special talents. Like …making things look easy …making strangers smile …keeping secrets.

More superpowers? Sometimes, I can make everyone mad at once…with a clear conscience …and everyone’s best interest at heart. It’s not easy, but I manage.

My most special skill? Just look at the genius I have for getting myself into the tiniest space between the sharpest rock and the hardest wall:

Redskins training campThis week on Facebook, I defended RA clinical trials run by pharmaceutical companies. The eternal optimist, I insisted that the good people I’ve met who work in that industry do the best they can. I might disagree with some of the guidelines for the clinical trials, but the people in charge are fair, I said.

Then, yesterday, a local RA clinical trial coordinator cornered me into the proverbial space between the rock and the hard place.

Let’s back up. Did you read the All I want for Christmas post? All I wanted was a high CRP

Friends suggested I skip some doses of CRP-suppressing medicines to give my CRP a chance to go up. They didn’t know I was already trying that. I didn’t want to tell anyone since I thought it might set a bad example.

Well, it worked. My CRP went up quite fast. I may have some of those “low-er” CRP genes, but I definitely have plenty of inflammation. Maybe that’s the reason I have a fever every day and every joint is painful and stiff.

Not an RA clinical trial fairy tale ending

Don’t smile too soon. That was my mistake. The woman on the phone showed me the error of my ways.

You see, I had gotten that high CRP illegitimately. She wants a legitimate one. She wants a CRP that is high after a minimum of 90 days on methotrexate, prednisone, ibuprofen, and Actemra (or whatever). She explained that if a CRP is not high at that point, it proves that a person “does not need to be in a clinical trial because the meds are working fine.”

It was a long uncomfortable conversation. I kept trying to hang up before I cried. She didn’t want to let me go until she convinced me I had done the wrong thing.

Aren’t there other RA clinical trials?

Screenshot of SpaceX secret cheeseYes. I’m on the phone every day calling locations around the state. However, several trials have rejected me due to specific treatments that I’ve taken. Others reject me because too many treatments have failed to help me already. So far being left-handed hasn’t come up.

I guess I’m not so good at secrets any more. Did I at least make it look easy?

Note: There are obviously other issues related to RA clinical trials that are not discussed in this post, such as taking all prescriptions as directed by doctors. This is my story, a narrow statement about my own experience with one trial coordinator. There are also other issues related to CRP. Click here for any posts tagged CRP.

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Kelly Young. All rights reserved.

This entry was posted on Friday, December 10th, 2010 at 8:17 am and is filed under Living with RA / Managing RA. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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