Thursday, August 13, 2009

Humira Tales

The Humira Pen

Look at the medicine in the window. It's clear, no bubbles, good to go!

Terry prepares to release the button

Hello all. It's a sticky, dreary day in Rhode Island. Perfect weather for blogging. I want to take this opportunity to discuss Humira. While I will provide my humorous, patient perspective, please visit: to learn more.

For those of you who don't know me as well...Quick Recap: I have had Crohn's for almost 9 years. Traditional pill and maintenance methods had not worked to control it or send it into remission. A blockage in my ilium led me to surgery in 2004 where they removed 1 foot of diseased intestine. Reasonable for a few years on maintenance meds, then it got bad, I opted to try homeopathic methods (cause I want to have babies and rid myself of crazy chemicals). Bad idea for me, got worse. Traditional and maintenance methods (with the exception of prednisone) did not work and since no one should be on prednisone for a lengthy time...we have moved onto biologics.

Since I was a lovely rare case and had an allergic reaction to Remicade, I am now trying Humira, which is an injection that I take every two weeks. I have been on Humira for 3 months now.

*One dose is one pen (see above). Treatment 1 is 4 pens, Treatment 2 is 2 pens and every dose thereafter is just 1 pen. *Maintenance breaks down into 1 pen every two weeks.*

Where do you inject? Crohn's patients in ject either in their belly or their thighs. My mom started Humira the same week I did and she prefers her thighs while I prefer my belly. It is essentially, where does it hurt less?! Let us tell you- that injection hurts like a M*F*. Obviously, we can deal, cause we are still on it. I whine the 10 minutes prior and tend to pysch myself out (which is why you can see Terry in the picture- he is the one that actually pushes the button to inject). The actual injection only lasts a few seconds, it is over when you see neon yellow in the window of the pen. After you give yourself a safety of a few more seconds, you can remove the pen and discard in a "sharps container".

The injection site is not tender, within minutes the pain is gone and then...I start to feel like a wimp cause I whined for so long before hand.

The big question: Is it helping?

I think so...I will still on prednisone when I started Humira and we weaned me off of that in the first few weeks of the treatment. At the last doctor's visit, one month ago, my very cool and creative GI Doc decided to tag team my Humira up with another med for a short period of time since I was not showing as much improvement as he wanted- my options- prednisone (steroid), entocort (steroid) or Xiflaxan (antibiotic that only targets the intestinal tract). Can you guesss which one I chose?

Of course I chose Xifaxan! With their powers combined, I have had on average 4-5 bathroom trips a day, I still need 9-10 hours of sleep each night but I am not fatigued during the day and my activity level is up. In a few days I will be done with Xifaxan, let's see what happens with just Humira! Will I visit the bathroom more frequently? To be determined!

Note: If you would like to learn more about Crohn's Disease and biologics, this is a very helpful webcast from Everyday Health.

Sunday, August 9, 2009

Tracking your BM's...

"Any Urgency? Any Accidents?"

When you go to your GI Doc, you may be asked questions like those above. Every time I go, I am asked! I blush, I look uncomfortable, and then I suck it up and try to provide as much information as I can, knowing this doctor has heard it all!

Then, the GI Doc asks "How many times are you going each day? What kind?" Hmmm...what kind? So, let's talk about your BM's. I know, this can be awkward to talk about, but we must press on.

I have created a way to document BM's, so that when I am asked this question, I can have all the facts! Not only can I provide facts, I can actually run statistics on my BM's. And the geek in me emerges! Proud geek.

I made a small chart, see above, and then I printed a bunch of these out (as big as a business cards) on card stock, since they have to last the week. When the week is over, I transfer the information to an excel document. Feel free to use the above chart or make one specific to you!

Left column = day of the week
Numbers across the top = represents each BM, up to 8times/day
Right column = Key to type of BM, designed similiar to a Likert Scale:
1 is ED, the worst, explosive diarrhea
2 is D, diarrhea
3 is P, pudding consistency
4 is SL, the soft log
5 is the log, what you aspire to...
* indicates if the BM was an urgent "must go now!" experience

Please note: If you go more than 8 times/day or if you would like to characterize your poop in a differe way, feel free! This is all patient-specific.

I recently saw this book What's Your Poo Telling You? at Urban Outfitters and then found it on Amazon. It will give you a chuckle and actually goes more in depth as how to document your experiences.

If anything, I hope this post made you smile. At heart, I hope you download the chart, make it your own and become a fantastic advocate on your health!