the current "state of the lupus"

In my previous post, I shared how I have found a new doctor that I am happy with. Well, that's the good news. The not-so-great news is that I feel like cr*p.

I have two major issues going on. One is related to going off the plaquenil for about a month, and the other is not.

First, the aches and pains. Ummm, ow? I'm up to 3 ibuprofen 3 times a day now (that's a ton for me). My shoulders, neck and back (and elbows??) hurt a lot in the morning, are so-so all day long and then hurt a lot at night again. It makes lifting my sweet son awfully tough.

The other issue are the two rashes. I have two distinct rashes, one that came back when I stopped taking the plaquenil, and one that has been consistently there for months now.

There is a rash on my legs...it's sporadic dots (look like small bug bites) on my thighs and a bunch on the back of both my calves. It doesn't really bother me too much, doesn't hurt etc.

Then the *other* rash. This has been the bane of my existence for a while now. It finally has calmed down on my face, so now I have just mildly red skin all over my face. But my neck and chest are covered in red dry rash. And it itches and hurts. My arms are also covered from my hands up to my t-shirt line. This is how I finally accepted the fact that the sun was causing this stuff. Every exposed area is covered in nasty red scaly stuff :( Basically, it's like all the skin on my arms died and peeled off and left dry scaly skin behind (gross, I know, sorry, but it's what is going on).

This arms/face/neck rash is really depressing. I also have hair loss, so I wear a bandanna every day. I've tried lotions and creams, anti-itch and moisturizing, natural and not natural, for the rash, but nothing seems to do any good. It's really frustrating, annoying, painful, and a also embarrassing.

My knuckles are a bit swollen, and for a couple weeks, the fatigue in the evening was pretty bad. Not so much fatigue now, I'm not sure if the plaquenil is starting to kick in, or if it's the ibuprofen or what, but I'm glad that's calmed down.

I'm considering calling Dr. W and seeing if she recommends taking anything stronger than the ibuprofen, or if I should try and tough it out until the plaquenil starts working (it takes a few months to kick in, it took around 5 months last time).

So that's pretty much it for now. Basically feeling crappy and crossing my fingers that the drugs will start working soon. The rash really sucks, it's so ugly.

One bit of good news is that Dr. W mentioned that lupus usually sticks to the one manifestation it shows itself in in the beginning, so since mine is skin and aches and pains, it probably wont jump over and start affecting the internal organs. That was a relief to hear, reassuring.

I've started doing the qi gong again, and hope to add acupuncture soon, too. I'm also seeing a counselor to try and help deal with all this junk.

Hoping to feel better soon!