Thursday, July 21, 2011

Let's talk about lupus

I had mentioned in an earlier post that pre-lupus rash returned on my face, neck and upper chest area around early May.  Since then, the rash hasn't actually gone away completely.  I started taking Prednisone for a while and it did lessen considerably during that time but promptly returned after I tapered the steroids.

Finally, I thought it would be best to speak to my rhumatologist about this.  I called him on Tuesday this week and asked if he could check my bloodwork from June 27th for any abnormalities.  His office called back and said that there wasn't anything glaring but the doctor wanted to see me anyway.  So, I went over to the office yesterday and we went through my bloodwork, line by line.  Turns out that my double stranded DNA numbers were elevated by 100 points compared to December 2010.  All other counts (hemoglobin, white blood cell, iron) were all better than December's numbers.  Judging from the rash and my reduced energy levels, my doctor recommended that I increase my Plaquenil dose from 5 days a week to 7 days a week.  He suggested I try that until August 18th and, if that doesn't help or if my condition worsens, then to start 10mg of Prednisone.

That suited me just fine but it wasn't easy.  I've spoken about being authoritative before but I've never had to act upon it the way I had to yesterday.  I had to keep going back to the fact that the rash has been there since May and has not gone down.  I had to describe my lack of energy in the mornings and absolute "need" to go down for a nap in the afternoons.  I had to ask him to go through the blood test results line by line.  In other words, I had to take charge of my own condition.  I'm not saying anything against my doctor.  I totally understand that he's erring on the side of caution when it comes to dispensing steroids which are very harsh drugs with serious side effects.  Still, I had to practically force him to do something.  We've sat back and waited in the past and it has led to serious flares.  This time, I cannot take that chance.  Not with an infant who's totally dependent on me.

Personally, I don't think the increased Plaquenil dose will make a difference.  Still, we'll see what happens.  I'll keep you posted.

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