The Biologics Discussion

We went to Dr. C's office and he made me another list. He told me I could choose from Remicade, Humira or Cimzia and that he may prescribe Methotrexate along with whichever biologic I chose.

I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.

We all know these medications come with risks, especially the risk of infections. I learned that I would have TB, Hepatitis B, Hepatitis C, HIV, and HPV tests before I could be cleared for biologic treatment. My doctor also mentioned that there is a very slight risk of Lymphoma with these treatments (slight meaning about a dozen cases in hundreds of thousands of those being treated).

On the brighter side, the dr. told me that there are fewer side effects with biologics and I would take them much less frequently than the other medications I was taking at the time. Best of all, biologics usually work.

I left feeling hopeful but still really nervous.

Immunosuppressants

6-MP

The next step was to try to suppress my immune system and, hopefully, get the Crohn's under control. I started 6-MP aka Mercaptopurine aka Purinethol soon after the capsule endoscopy. About a month after I started I began to see improvements. If I ate three meals in one day I was in the bathroom four or five times instead of eight or nine. If I didn't eat three meals my bathroom trips were down to one or two. Best of all, there was one day every week or two when I wouldn't even make one trip to the bathroom.

I did not, however, see any improvements in my arthritis symptoms or fatigue. In fact, the fatigue became significantly worse. I didn't realize it at the time but I was in a fog for close to eight months. I don't know how I made it through. I woke up in the morning and was sometimes physically unable to find the strength to get out of my bed. My one-block walk to the subway left me drained and short of breath. I spent most of my day trying to gather up the energy to complete the simplest tasks at work. Getting to work and back home left me so exhausted that I couldn't do anything else. I spent at least one day each week sleeping. I was a zombie.

I was on 6-MP for eight months because it seemed to help in the beginning. At least I was seeing some results. We tried increasing my dose until I maxed out. Then we added Entocort and finally Pentasa. I guess neither I nor my doctor wanted to give up on it. Then I got sick.

I had a slightly sore throat Thursday evening. On Friday, I called my doctor. He told me to stop the 6-MP and call him on Monday if it didn't get any better. By Monday I couldn't talk. I took every cold medicine I could get my hands on and I still couldn't sleep. My throat was so raw that the mere act of inhaling made me cough. I started an antibiotic on Monday and felt better immediately.

The day after I finished the antibiotic the sore throat returned. Thankfully, I hadn't restarted my 6-MP. My doctor was on vacation and I was halfway across the country for a wedding. The day I returned to New York, I saw another doctor in the practice. He thought it would be a good idea to see an ear, nose and throat doctor just to make sure it was nothing to worry about. The specialist decided it was nothing to worry about. I finished a Z-Pak and all was well.

In fact, I was feeling so much better that I was thinking twice about restarting the 6-MP. Two weeks after I had gotten sick I breezed through a huge pile of work that had been accumulating on my desk for months. I could walk to the train without needing a nap. It was fantastic. Of course all of this new found energy came with a price - my Crohn's symptoms were as bad as ever. I put in a call to the doctor.

Crohn's It Was and Crohn's It Is and Crohn's It Ever Shall Be

A few days after the capsule endoscopy I got the results from my doctor. He gave me a report with some amazing color pictures attached. I will have to figure out a way to post a picture or two. This is what the report said:

Reason For Referral:
Abdominal pain, rule out Crohn's Disease

Procedure Data:
Small bowel passage time: 2 hours 49 minutes

Procedure Info & Findings:
The patient swallowed the capsule without difficulty
-Found moderate to severe jejunitis and ileitis with relative sparing of the duodenum.
-Jejunal and ileal mucosa appear erythematous, edematous with multiple erosions and ulcers. -The capsule was seen passing into the cecum.

Summary & Recommendations:
Findings consistent with Crohn's enteritis

So Crohn's it was and Crohn's it is and Crohn's it ever shall be.



* From thefreedictionary.com

erythema- Redness of the skin caused by dilatation and congestion of the capillaries, often a sign of inflammation or infection.

edema - An excessive accumulation of serous fluid in tissue spaces or a body cavity.