Rhumey Update

Had another visit with Rhumey today.  Here are some of the updates:

My weight has been steadily going up with each visit, so Rhumey asked me what my normal weight was before I got sick.  I'm a couple pounds below my normal weight, so I'll have to start watching it more so I don't go over.  Part of the weight gain is probably a side-effect of the prednisone, which I want to get off of soon anyway.

On my last visit, Rhumey had dropped my prednisone from 7.5 mg to 5 mg.  Since then I have been feeling more tired and been experiencing headaches.  Despite that, our goal is still to get me off the prednisone.  Dr.  K dropped my dosage again today and was nice enough to keep my pill swallowing issue in mind.  The pills I am currently taking are 5 mg tablets that can be split in half.  He said that once patients get down to 5 mg, they usually taper them off by lowering it by 1 mg at a time.  If I were to do this, it would mean I would need to swallow 4 1-mg pills.  We could try dropping it to 2.5 mg and I would just need to take 1/2 a pill, but because it is a 50% drop in dosage, I'd likely start to feel the effects of the lupus coming back.  I told him I don't mind swallowing the prednisone pills since they are so small, so we opted to go for tapering the prednisone slowly.  The plan is to lower the dosage by 1 mg each month assuming my symptoms and blood tests are relatively in check.

Because my symptoms seem to be coming back, Rhumey thinks I may have to start another medication in addition to the plaquenil so that I can get off the prednisone.  Although I may be able to get to a low 1-2 mg maintenance level of prednisone, the long-term effects of taking even a small amount for 40 or so more years could be damaging.  He said that if I were a 70-old in the same position, he would probably opt to keep me on the prednisone since the risk of staying on a low dose for a shorter amount of time would be lower than introducing a new medication.

The new medication I will probably start is azathioprine (brand name: Imuran).  It is an immunosuppressant drug to help reduce inflammation and slows damage to the organs caused by inflammation.  Because it suppresses my immune system, I will be more susceptible to infections.  Other side-effects of the drug are lowered blood counts, stomach pain (Rhumey says it can be pretty severe), and nausea.  There is also a chance for excessive drug toxicity if I can't metabolize the medication properly.  There is a blood test (thiopurine methyltransferase - TPMT) we can do prior to starting the medication to see if it will cause a complication.  We'll test for this on my next blood test and see how I am doing in a few weeks to see if I'll need to start taking azathioprine.  I'm really hoping that I don't!

I also asked Rhumey about Sjogren's Syndrome, which many lupies also suffer from.  The primary symptoms are dry eyes, dry mouth, and dry skin...all symptoms that I have.  He said that the symptoms often overlap with lupus.  I didn't test positive for the specific antibody, but he said that it wouldn't make much of a difference because it wouldn't change my treatment.  I am seeing my ophthalmologist on Tuesday, so I'll mention the dry eyes to her and see what she recommends.

He asked me if my Raynaud's and headaches were bad enough that I wanted to start treatment for it, but they are pretty mild, so I opted not to start another medication.  I'll need to monitor these symptoms, though, to make sure they don't get worse.

Other than that, Dr. K said I am doing well.  We scheduled my next appointment in 2-1/2 weeks and I'll need to take my blood test a couple days prior to that (no blood tests today!).  If the results from that come back good, we can start spacing out my appointments further apart.  'Til then, that's the Rhumey update for now!

- a little lupie -