No Progress

So, I spoke too soon.  Drawing less blood doesn't indicate getting better.  It just indicates that we just need the basic information to show that I'm not getting better.  :(

If you've been following the blog for the past few weeks, you'll know that I've been suffering from joint pain, fatigue, and continuing hair loss.  When I went over the symptoms with Rheumy, he said he had a feeling I might have started flaring based on my blood test results.  My lab results show that I still have low blood cell counts (both red and white), and the sedimentation rate has not improved.  Rheumy bumped my prednisone dosage back up to 5 mg and said that we'd need to add another medication since I wasn't showing any improvement.

At my last two Rheumy visits, he had talked to me about Azathioprine (Imuran) and ran a blood test (thiopurine methyltransferase - TPMT) to see if I had a gene that could lead to excess drug toxicity.  Well, blood test came back and I am heterozygous for the gene (doesn't this take you back to biology class?!), meaning that my body metabolizes the drug slowly.  If I were homozygous (both alleles the same), that would mean my body couldn't metabolize the drug and I wouldn't be able to take it.  Because I am heterozygous, I can take the medication, but will have to start with a very low dose and be closely monitored for excess drug toxicity.  This can cause more complications, including me ending up in the hospital.  Also, because the medication may actually cause lower blood counts, I'll probably need to bump up the prednisone for a while to help counteract this as I start it.

Because of this, Rheumy also offered another drug option -- Methotrexate (Rheumatrex, Trexall).  This is a drug that is often used to treat cancer patients and has some pretty scary sounding side-effects (liver damage, lymphoma, lung damage, and life-threatening skin reactions).  These side effects are usually the result of taking higher dosages for cancer, but since I would be taking it for lupus, the dosage would be much lower.  Even so, it can cause mouth sores, more hair loss, and fatigue.  Still scary.  The drug is not safe to take while pregnant, so if I want to think about pregnancy in the next year or so, this wouldn't be a good option.  It would take a few months to ramp me up to the right dosage, then if I want to try getting pregnant, we'd need to ramp down and be off the drug for three months.  The one benefit of this drug is that I would only need to take it once a week.

After hearing both of these options, I asked Rheumy what the risk would be if I decided not to take either of them.  He said that the risk would be that the lupus stays the same or gets worse.  If it gets worse and starts affecting my organs, that could be dangerous.  He mentioned a few other drugs that lupies take, but he said that my lupus was not serious enough for those yet.  These two drugs are probably the lowest-risk options for me right now.  I needed some time to think about this and do more research, so we agreed to wait until my next visit in three weeks to see if my blood tests improve and for me to make a decision.  Right now I am leaning towards the azathioprine versus the methotrexate, but I'd really prefer neither of them!

In other news, today I woke up with joint pain in my left elbow.  It is funny how a body part goes unnoticed and taken for granted until something is wrong with it.

- a little lupie -