Will Cimzia Work for Me?

So, I'm trying it.

Experts say it could kill me -- double my chance of developing lymphoma. And, it will definitely suppress my immune system, making me more susceptible to infection. They say that choosing it is a matter of deciding that not trying it would, in the end, be worse.

So I've decided to take the plunge.

"Some people go sky diving for fun," Pharmacist Greg patiently explains on the phone. "It is certainly a high-risk activity. I would never do it for fun. But if I were in a plane that was crashing, I would choose to jump with a parachute instead of going down with the plane."

I am a woman, wife, mom, sister, daughter, aunt, future grandmother, neighbor, church volunteer, amateur chef-at-home, nurse, writer, teacher, national conference presenter, auditor, caregiver, mediocre gardener and homemaker, home-spun quilter, traveller, baseball fan, political enthusiast, theater and music fan -- and I have Crohn's Disease.

Yuck. That last one isn't my favorite identity. But in the 12 years since I found out why my gut interferes with so much of my life, it has taken away more and more of my ability to fulfill and enjoy other roles in my life the way I wish I could.

I might as well warn you right now that if potty talk and body-function words offend you, this should stop reading now. I'm not going to mince words or clean up the messes this ridiculously messy problem creates.

A little bit about Crohn's disease -- and my version of it. The Crohn's and Colitis Foundation of America (CCFA) defines Crohn's disease as "a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon." (http://www.ccfa.org/info/about/crohns)

For me, Crohn's disease means I usually have cramping, painful diarrhea multiple times daily. Sometimes I've been unable to get to the toilet in time. Fatigue is a constant annoyance. Periodically, I develop partial food blockages in my small intestine that hurt worse than my normal diarrhea, but continue to build up pressure and pain instead of being relieved a bit by a trip to the bathroom. Those episodes usually end in extremely hard-to-pass stool, followed by familiar explosive, watery diarrhea. Afterward, my abdominal muscles ache for a couple of days from the exertion, and I am exhausted for a while. Sometimes there's a lot of blood in the toilet when I finish.

I've given up on contact lenses because of the sore dryness in my eyes, and I suffer a lot of sleepless nights from joint pain, and from just plain sleeplessness. Slacks and skirts MUST be loose-fitting, preferably stretchable around the waist, or they bind and hurt more as the day progresses and my gastrointestinal (GI) bloating increases. Panty hose are impossible to wear. And I'm forever seeking clothes that feel comfortable, or at least don't hurt, but also look good instead of frumpy. Hard to find.

And for the past three years or so, worse lately than ever, pain under my right rib cage, feels like someone punched me -- hard. I've been searching for the ever-elusive comfortable bra that won't amplify the pain. The high-abdominal pain seems worse when I eat solid foods, so I drink a lot of smoothies, instant breakfast and pureed soups early in the day, hoping to stave off until night the need to take a Lortab. And I've spent a lot of money to find out that my heart, gall bladder, liver and pancreas are completely healthy and normal, according to test results.

Here are some medications I've already tried: Historically, steroid therapy helped my GI symptoms some, but caused me severe peripheral neuropathy and myopathy. Roughly ten years ago, I used Remicade infusions with some success, but ultimately had to stop because of the cost and resistance from my health insurance company. Over the years, I've taken Mesalamine in the forms of Asacol, Pentasa and Canasa with some relief at times. Simethicone to minimize gas and Loperamide to decrease the diarrhea are musts if I'm leaving the house. Loperamide takes the edge off in the evening if the pain has been too intense all day. Ondansetron decreases the nausea and cramping a little when I get desperate during the day. And sometimes, a little peppermint tea will sooth -- especially when I'm feeling deprived because I would really rather have a hot-fudge sundae.

Yesterday, I took my first dose of Cimzia, a new medication that I hope will help. A home-health nurse came to my home to get me started. The day before, Fedex delivered a huge, styrofoam box containing my first three doses, due two weeks apart before switching to monthly. Bubble wrapped and cold, thanks to two still-frozen ice packs, were three boxes holding two pre-filled syringes each.

Yes, each dose requires TWO subcutaneous injections. The reason?
The fatty tissue just under the skin can only tolerate 1cc of medication at once. And Cimzia is viscous. The first injection in my leg REALLY hurt and created a bumpy bleb under the skin that took a while to smooth out. And it took a long time to inject. The second one, in the more abundant fat of my abdomen, was a little less painful, but still hurt.

I waffled for several weeks about whether to start Cimzia, because of the potential long-term problems the drug could cause. Analyses of Cimzia's clinical trials generally state that lymphoma occurred about twice as frequently in Cimzia's clinical trial subjects when compared to the population at large, though it still occurred in less than 1% of participants.

But there's more to the story.

First, the clinical trial literature doesn't generally specify how long the study lasted. And if Cimzia effectively controls Crohn's disease symptoms, I could be using it for the rest of my life. Or until it causes other problems. Or until a cure or a better treatment is found. Clinical trials don't generally last more than several months or a few years. So  long-term effects of the drug are less certain.

Second, I know that young men are usually over-represented in clinical drug trials, since experimenting on child-bearing-age women is a bad idea. I am none of those things -- young, male or of child-bear age. So I wondered how effects of my starting Cimzia at age 50 might differ from study results. So I asked Pharmacist Greg about this, too.

Greg reminded me that the thymus gland, chiefly responsible for immune-system development in young people, atrophies and disappears roughly around age 30. And the clinical study literature did specify that study subjects who contracted lymphoma during the study were younger than that. He said that although nobody knows for sure, susceptibility to lymphoma in response to immunosuppressant drugs like Cymzia might be greater in younger people because of the way it affects an active thymus.

Greg also reminded me of the risks of enduring inflammation that is ineffectively controlled. Over time, accumulation of scar tissue that increase risks of bowel obstruction, continued difficulties with absorbing nutrients, and potential liver damage from drugs I'm now using, have a far greater chance of taking a toll on my health, well-being, and quality and length of life than does Cimzia. He was quick to add, of course, that if I happen to develop lymphoma, the statistics won't matter to me.

I asked how long I'd need to take Cimzia to find out if it will work for me. The literature suggested around two months. So, he said, if it doesn't work, I could simply stop taking it, which would reduce my exposure to it, and hopefully, the risk.

So I decided to chance it.

The story was a little different when Brandie, my home-health nurse came. Having treated several Crohn's patient's with Cimzia, she warned me of a side effect that wasn't in any of the literature. She said that Cimzia usually causes increased fatigue and feeling ill for a couple of days after the injection. And she said that the patients she sees generally haven't experienced effective treatment results from Cimzia for several months. One patient stuck with Cimzia's monthly injections for a year before giving it up without feeling better. But she said most of her patients eventually feel a lot better. They're not cured, but they can carry on normal activities if they are careful about reducing stress, exercising, sleeping enough, and taking their Cimzia on time.

I hope to be one of the success stories. And I hope it doesn't take several months to find out if I will be. So far, yeah, I was tired last night. But instead of being a problem, I slept quite soundly -- through a loud thunder storm that woke up my 22-year-old daughter sleeping across the hall. And I slept an hour longer than planned this morning. Today, I feel maybe a little less fatigue than usual. Probably because I slept well, is my theory.

Anyway, we'll see. I'm hoping for the best. And my plan is to write about it here. Maybe it will help someone.