Mayo Clinic Gastroenterologists Weigh In

Almost a month ago, I had an appointment with my gastroenterologist to begin strategizing my future treatment of Crohn’s Disease now that the remission period had ended. I had begun to have episodes of considerable pain in my abdomen which has become all too familiar over the last ten plus years with the disease. At that appointment we discussed options the least extreme being oral medications including Pentasa (mesalamine) which is an anti-inflammatory that I began taking prior to that appointment and has been a staple of my treatment for the last decade. It is not effective enough to use alone, and in the past I have relied upon Prednisone, a corticosteroid, to quell bouts of high inflammation. There are long term negative side effects associated with long term use of Prednisone; so unfortunately, I cannot stay on it for very long. My gastroenterologist instructed me to begin taking Entocort, which is another form of steroid that has a lower prevalence of negative side effects.

During the appointment, my gastroenterologist called my oncologist in private and they discussed future options. The topics of discussion were the two immunosuppressive drugs that I was taking prior to my Hodgkin’s diagnosis. They include Azathioprine (Imuran) and Remicade(Infliximab). Remicade is a TNF inhibitor that I actually signed a waiver at the onset acknowledging the risk of cancers such as lymphomas. Obviously, I am concerned about restarting drugs such as these which may have been the cause of my lymphoma. Another topic of discussion was the option to surgically remove the affected portion of small intestine, which is approximately a foot long located at the terminal ileum.

After their discussion, my gastroenterologist gave me a quick summary. He said that both doctors agreed to seek expert opinions in both lymphoma oncology and gastroenterology as well as the manufacturers of Remicade to investigate any possible correlations. My Gastroenterologist has previously said that he was aware of a possible correlation between Azathioprine and lymphoma. On a different occasion, my oncologist had indicated that to his knowledge the only believed association with Remicade and lymphoma was with Non-Hodgkin’s lymphoma. My perception was that my oncologist believed my case of Hodgkin’s lymphoma was independent of the Remicade that I had been taking. He also expressed his opinion that resuming Remicade would have no impact on whether I could or would have a recurrence of Hodgkin’s.

I left the appointment with instructions to begin Entocort and wait for my two doctors, both of whom I trust and respect, to conduct research and get back to me. Yesterday my gastroenterologist called me with the results of his research. He stated that he contacted the medical director of Remicade who recommended against resuming Remicade. My doctor said that this was not surprising given the fact that the Remicade medical director has the goal of minimizing the negative side effects associated with that drug. My doctor also contacted gastroenterology experts at the Mayo Clinic. They also recommended avoiding Remicade “as long as possible”, and to instead consider Entocort on an extended basis. They also advised to never resume Azathioprine. The Mayo Clinic experts were not too enthusiastic about recommending surgery, but did not discount it.

So what does all of this mean? I still want to find out the results of my oncologist’s research, because his early opinion was that there likely is no lymphoma risk in resuming Remicade. Hopefully I will be able to visit with him when I go in next week for a CBC.

The good news is that Entocort does appear to be effective so far. The episodes of pain have been less severe and far less frequent. I am not sure yet how long I can stay on Entocort without negative side effects, but at least the early result is optimistic. Perhaps, I can avoid the need of surgery and investigating other medications if the success with Entocort continues.