Crohn's Drama Update

May 19, 2008

I went to the doctor this morning in a glum mood because I knew things weren’t quite as good as they were a few weeks ago, internally. About a week ago, I started feeling kind of bad in my tubes and I figured that was taps for getting off of the prednisone.

Indeed. What is happening to me, this getting sicker again, is not uncommon. I have tapered my prednisone dosage down to a fairly low, if steady, state. And now the disease comes back. It happens.

So now I have to add 6-Mercaptopurine to my drug diet. As Wikipedia puts it, it’s an “immunosuppressive drug used to treat lymphoma.” Chemotherapy for Crohn’s.

The Wikipedia entry will also tell you:

Patients who exhibit myelosuppression or bone marrow toxicity should be tested for Thiopurine methyltransferase (TPMT) enzyme deficiency. Patients with TPMT deficiency are much more likely to develop dangerous myelosuppression. In such patients it may be possible to continue using mercaptopurine, but at a lower dose.

I do have a Thiourine methyltransferase enzyme deficiency, though it’s partial, not complete. That means fairly regular blood tests for me to make sure my marrow is not going south on me. I hear it’s pretty gnarly when that happens.

This is a bit of a low trough in my otherwise decent progression. I’m glad I’m not in the hospital, but I have fallen into a general malaise (nausea, tiredness, general “down-ness”) that I had thought myself breaking free of. I’m trying to keep my chin up.

At least, for now, I don’t have to get Remikade infusions. I’m glad, because one of the awesome side effects of that drug is lymphoma.

Hell to the no.

3 Comments

bob jaffe says:

May 19, 2008 at 8:25 pm

Hi Lyza,

I don’t usually follow the blog, but when Fran told me about this particular entry I wished to read it myself and respond to you directly so you will have my own best wishes for this health issue to finally settle down and give you a better break than it has been granting you thus far.

I want you to know that I really care about you,

Bob

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thisKat says:

May 19, 2008 at 11:36 pm

Lyza, I’m sorry you’re feeling so down. I wanted to tell you that I remembered a tweet from you last week about little blisters on your hands. At the time you wrote that I was having the same thing. Turns out it’s a minor virus called Hand, Foot, Mouth disease and it’s going around. I’ve got a light case and my older daughter has a moderate case. It sounds terrible but it’s a really common virus–everyone gets it–and so mild that I wouldn’t have even known I had it if my daughter hadn’t been sick. Google it and see if it fits some of the things you’ve been experiencing the last week or so. I hope you feel better!

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Gary Walter says:

May 21, 2008 at 12:28 am

Hi Lyza,

Over the last several months I’ve heard you mention sickness, surgery, and whatnot on Twitter. However, being much smarter than I look, I’ve learned a long time ago to not ask people (women in particular) about their health issues.

I don’t know much (if anything) about Crohn’s, but I do know that any chronic illness can be miserable, discouraging, and downright depressing – not to mention making one feel hopeless. Everytime I’ve seen you (IP2, Beer&Blog, etc) you’ve looked healthy and strong. One would never know you’re suffering.

You’re in my prayers. Know that.

gw

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