Tuesday, May 12, 2009


I've been reading a lot about the medications some people use when they have lupus. I have by no means used them all, but several have worked for me.

First, I was prescribed Prednisone. This steroid relieves the swelling and thus the pain associated with the pain. It worked for me. The side effects, though, are not enjoyable.

First, I gained a lot of weight. I think every so often about a woman I knew who was a model, and she had gained 100 pounds and lost the life she used to lead. I almost hid from others, ashamed somehow of my modest 30 pound weight gain, and lacked the new clothes for my new, larger figure. But I should have known strangers' opinions don't matter, and my friends still love me, no matter what size label is in my clothes. And I began losing my hair. Not sure if that's from the steroids or what came next:

Cytoxan and Imuran. I had to take those meds, can't remember which one came first, because I developed vasculitis in my ankles. Couldn't walk very well. Had to wear lace-up shoes and carried a cane. Talk about embarrassing....falling down en route to a job interview and stepping out of my shoe while being dressed down in my boss-of-the-day's office. One of the meds caused me to have a taste in my mouth as if I had licked a dirty ashtray. Needless to say, I lost my appetite.

Then came Plaquenil. I took Plaquenil while I was still taking Prednisone, for three months; then the doctor weaned me off Prednisone. The Plaquenil has worked well for many years and I can live with the side effects: I have to protect my eyes and have periodic eye exams.

But it's worth it.

Monday, May 4, 2009

Pain is Pain.........

I had taken this blog down a few days ago, and then realized, as I was trolling through the Internet, that some comments and references to this blog were still out there. What was I thinking? I was missing some opportunities to blog directly about lupus and share my blog posts with others.

So I took a deep breath and created this blog again, hoping I could have the same title....And yes, I can!

So what can I say today about lupus? I'm feeling more effects today from fibromyalgia than from lupus. My muscles hurt, all over. Kind of like when my joints hurt, all over, when lupus was rampant in my body. I don't know which hurts more.....but it doesnt' matter, anyway. Pain is pain. And I know it will get better. Maybe not today, but it will get better. That's what I kept telling myself -- and others -- who were experiencing pain from SLE. Take your meds, and take them regularly. Don't miss any doses of Plaquenil, or prednisone, or Imuran or Cytoxan -- whatever your rheumatologist has prescribed. A Tylenol every now and then, if it's suggested by your doctor, could also help.

In the meantime, it's a Mean Time.