Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Sunday, September 30, 2012

Hello Humira

  UC = ulcerative colitis     BM = bowel movement     GI = gastrointerologist  

My affair with Humira was short-lived.  Both my regular GI and the UC expert at the UCSF Medical Center agreed that I should at least try it while I was waiting for surgery in an attempt to get my symptoms a little more under control before I go under the knife.  I have heard and read many times that the healthier patients are when they go in for surgery, the lower the risk of complications and the more successful the surgery.  Even though I'm already off of Humira, I thought I'd post a little entry about what it was like just in case anyone out there is considering it or about to start it.

Since Humira is administered via self-injection, the first thing I noticed is that everyone wanted to make sure I was educated about how to use it from all angles: info packets from the doctor and nurses; a kit with instructions, practice supplies, and a "how-to" DVD; even recorded messages at the end of every phone call with the drug company... and after all this, even though the instructions are VERY simple and straight-forward, they insist on having a nurse come out to my house to show me how to use it and supervise my first self-injection.  In order for my insurance to cover Humira, I had to use a mail-order prescription service.  So after I made the necessary phone calls, had the prescription sent over to the company, answered a questionairre, etc, they finally mailed the first loading dose out to my house.  Since it has to stay cold, it is delivered in a styrofoam cooler with big cold packs.  Because I didn't want to wait for an appointment with the home-visit nurse, I just went in to my medical center and had one of the nurses there supervise my first Humira administration.

The first loading dose is four syringes.  The second loading dose - two weeks later - is two syringes.  From there on out, the maintenance doses are one syringe every two weeks.  When I first thought about the idea of giving myself an injection, I was picturing they type of syringe you see at the doctor's office when you get a vaccine, and though I have absolutely no problem with needles, I wasn't sure if I could do it to myself.  After reviewing all the instructional materials, however, I was releived.  I wouldn't actually have to stick a syringe needle through the layers of skin and figure out how deep to go, etc., because the common method of delivery these days is what they call an "injection pen".  Basically it's a tube you just hold up to your skin and push a button while the pen does all the work.  Pretty dummy-proof.  Below is a step-by-step of what the injection process consists of.

1)  First, take your Humira out of the packaging and set it out for about twenty minutes so that it warms up to about room temperature.  (From what I hear it is more painful if you inject it cold.)  While you wait, pick your injection site.  Allowed locations are they tummy (at least two inches away from the belly button), or the top of either thigh.   Since my first dose was four separate injections, I used either side of the belly button and both thighs.

2)  Use a small ice pack (they provided a mini re-useable ice pack in the info kit) to ice the injection site for two or three minutes.  I found that the length of time you ice is the one thing that has the biggest impact on how painful the injection is, so don't skimp on this step!

3)  Use a little antibacterial swab/wipe to sanitize the injection site.  Now that it's clean, don't let anything touch this area before you inject yourself.  Wait for it to dry.

4)  Check through the "window" of the pen to make sure the medicine is clear liquid (not cloudy) and that it is the right amount (goes up to the line).  Take both caps 1 & 2 off the pen and hold it in your dominant hand.  With your other hand, pinch an good couple-inch chunk of skin so that it's firm and pouches out.

5)  Press the pen against your skin (careful to avoid accidentally injecting your fingers) at a ninety-degree perpendicular angle, with the little "window" facing you.  When you're ready, press the button at the top of the pen.  You will hear/feel a loud "click" as the needle is released, and you will see the yellow end-stopper of the syringe moving in the window as you feel the Humira being dispersed into your pinch of skin.  This takes about five seconds; make sure to hold the pen steady against your skin until the medicine is done dispensing.

6)  When the yellow stopper stops moving, gently pull the pen away from your skin.  (If you can't see the window, count to ten since they never last longer than ten seconds.)  Throw the pen away in the specialized sharps container that came with the medication delivery.

7)  If there is a drop of blood or clear liquid, gently press a cotton swab to the injection site.   Be careful, as the spot that was just punctured will be very tender for several minutes.  DO NOT RUB the injection site.

That's all there is to it.  I did fine administering all the injections to myself for both loading doses.  It was pretty simple and becomes "old hat" pretty quickly.  Some people have small reactions at the injection site such as lingering pain, itchiness, rash, etc, but I never did.  An hour later, it was like nothing had taken place there.  I did notice some fairly mild nausea/decreased appetite for a couple days afterwards, but I wasn't sure if this was due to the Humira or the methotrexate since I took them both on the same day.

On the evening of my second loading dose, I felt a bit feverish and found that I had a temperature of 101.  I was instantly concerned since my reaction to Imuran was a dangerously uncontrollable fever, so I prepared myself for a battle.  However, after I popped a Tylenol, it went away and didn't come back.  I'm not sure if this was a reaction to the drug or just my body trying to fight off a bug under the effects of immunosuppression.  I never found out since that was my last dose of Humira.

Since my surgery is now scheduled, the anesthesiologist recommended I not take the last dose of Humira or methotrexate right before surgery, so I have stopped both drugs.  So as I said, my affair with Humira was short-lived.  Overall, my final observation is that although I saw no change in my symptoms during the month I was on the drug (which was no surprise since neither of the other immunosuppressants I tried worked either), the whole experience was surprisingly easy.

T H I S    W E E K ' S    H E A L T H    L O G     (During the Humira Trial)

My Condition: Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms: Frequent severe abdominal pain, lots of blood at every BM, 8-15 (mostly liquid) BM's per day, weakness, fatigue, nausea, loss of appetite, weight loss, occasional dizziness or light-headedness.  (At this point some of these symptoms are simply from the malnutrition, dehydration, and constant blood loss.)

Prescription Meds: Humira, Methotrexate, Asacol HD (4800mgs), can no longer retain enemas or suppositories.

Side-Effects:  increased nausea, increased loss of appetite.

Supplements: L-Glutamine, Omega-3, calcium, vitamin D, vitamin C, biotin, metamucil, multi-vitamin.

Diet:  No meat, wheat, dairy, beans, nuts, seeds, raw veggies.  Nothing too processed or difficult to digest.  Mostly eating eggs, soy/tofu, cooked veggies, some fruit, rice, potatoes, gluten-free products, corn chips/tortillas.

Exercise:  None - too weak.

Stats: Height 5'7", weight 140 lbs, body fat 18%

Have Tried: Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.

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