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.
Wednesday, November 4, 2009
Immunosuppressants
Labels:
6-MP,
Crohn's Disease,
Crohns,
Immunosuppressants,
Mercaptopurine,
Purinethol
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Best wishes to you. None of us can control our health or our life. Some of us just have the illusion of control. Crohn's and Ulcerative colitis patients are true survivors as these are illnesses that most can't even imagine.
ReplyDeleteStay tough!
Great post. I have had ulcerative colitis since 1996. Ruptured appendix, blocked bowel twice. You know how it goes. Please don't get too discouraged.
ReplyDeleteThings can be managed. The ones we cannot manage we must laugh at sometimes.
You need a hug. there are plenty of us to offer support or to commiserate with. Hang in there. IBD SUCKS CANAL WATER!!!
quack@insight.rr.com