28 Days of No Biologic: Adventures in Rheumatoid Arthritis

My rheumatoid arthritis is not good. It, apparently, has not been responding to the weekly injection I’ve been doing for the past ten years. X-rays suggest damage, damage that probably shouldn’t be there, suggesting my immune system has been a busy bee eating holes in major joints.

So, I have some options. One, being to go on another biologic, Humira, which does what Enbrel did, but it does it in a different way. There is a chance a new theory will work, but there is also a chance my arthritis is “particularly aggressive and does not respond to TNF blockers,” which is scary, because ten years ago, when I was diagnosed there wasn’t anything else. Pharmaceuticals have also been busy the last ten years and there is a new biologic blocking a new thing, IL6. They don’t really know why it works, but it does.

But, let’s make things a little more complicated, and add in the fact that my insurance is going to expire as of August 6, luckily I have one more option.

That option is a clinical trial for some up and coming IL6 blockers. There is no placebo, so I’ll get something. I am a great fit because I am a “TNF failure.”

Now, the reason I’m telling everyone all of this is because I need a project to get through this. I wanted my blog to be positive and funny. I want my posts to be humorous and clever. I want to be positive. However, in order to get into a clinical trial, I must go off the medication that has been failing, but keeping the wave that is a chronic illness at bay, for 28 days. I have taken this injection every week for the last ten years.

Prior to treatment, I was unable to put up my hair, fit my feet in shoes, or pull up jeans. I haven’t skipped more than one week of Enbrel in ten years. I show symptoms at a little over a week.

I get it. I understand the need for this, what the clinical people refer to as a “washout period.” The results can’t be influenced. They want to see what my arthritis looks like in all its aggressive glory so they can compare to my arthritis under the constraints of an IL6 blocker. It is actually a reasonable washout period apparently. Some studies request 3 months. Some studies won’t allow Tylenol while handling the washout period. The clinical people refer to this as “unpleasant and uncomfortable.”

Anyway, yesterday was my last Enbrel injection. Today is day one. Here we fucking go.Enbrel!


2 thoughts on “28 Days of No Biologic: Adventures in Rheumatoid Arthritis

  1. You are in a situation that I fear so much – having to go off a biologic. I stopped Enbrel for 3 weeks to have shoulder surgery and the dinosaur came back with a vengeance at week 2. I’m holding my breath for you to get through it. Enbrel didn’t work as well after that break and I turned to Humira. It has been great. I’ve even been able to wear normal shoes again. I”m following your blog. Please post how you are doing. It matters!

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