Lupus being a pain in my.... Everywhere
 

I was diagnosed in July after dealing with symptoms and uneducated doctors for 7 years, with Lupus, and Sjogren's.

I'm being treated with the kitchen sink method... I'm allergic to Plaquinil (or at least the generic form). The MTX is making my hair fall out by the handful at 4 pill a week dose. I was on 12mg daily of steroids, bumping up to 24mg gave no additional relief. Adding the shot every other week gave no additional relief. I'm handling the cellcept (generic) okay at 1000mg a day, but I'm not sure it's kicked in yet, only been on this one for a month & a half.

So at my last appointment the doc dropped everything except the cellcept, dmso 4x daily and advil 800mg up to 5 times daily. Except I haven't gotten into this new routine to do any of that any sort of regular. I'm a bit scared of the (what seem to me as high doses) of advil, and the low doses have never even touched the pain. The dmso details say not to have anything on your skin lest it be transported too, so I clean with alcohol and a cotton ball every joint before I apply it. Then I sit for 20 minutes while it absorbes. It feels like it's an hour long process just to do this each time.

So now that I've caught you up on the background, now for the complaint... I'm in a serious flair. I was out of bed today for all of 3 hours, yet I'm expected to devote 4 hours of my day to putting on DMSO? The treatment takes more energy than I have. I've been in such pain today that I really think I'm headed for losing the option to move my hands soon. (& really who says that? Like moving/using their hands is an "option?) tomorrow is a holiday. One that we bought all the obligatory food for, one that I'm supposed to cook for... It takes longeer to cook a turkey than the time I was out of be all day yesterday... I'm not having a whole lot of faith in this holiday going smoothly... But that complaint is really about not being able to "pass" for normal, about not being able to meet my own expectations, about my fear of letting others down.

What I really want to know is - how do I get better? We've just been "trying" things with all the medications. Now the plan I've got doesn't seem very realistic or feasable, nor easy. I'm sick... I need easy... Anyone got a better plan? Or anyone got a better coping plan when things just don't work out right? I could use the help...

When I was younger, and my Lupus was being nightmarish, I would take a low dosage of prednisone and a secondary anti-inflammatory (don't recall the name) and take lots of warm baths and extra rest. My diet would need to be extremely pure as well...no sugar, in particular. Sending healing thoughts...sounds VERY difficult.


Sadly, I had to learn how to take shortcuts. If I was making a meal, Like Thansgiving for example and I was sickly, I would order a turkey from a restaurant, ask a good friend to bring one or two sides, I would make one side and dessert with the help of my husband. So not like my usual self...but I had to compromise or it would be pure hell and a half the next day....and I mean it!

Oh...and sometimes I just had to cancel all activities and it was difficult and embarrassing. This happened to me just the other day. My SS isn't usually too bad, but it was acting up a bit and then I caught a cold that was nightmarish. I planned a party and had to cancel. Was in bed for days....very difficult.

It is the nature of the beast.

Prednisone is a wonder drug...but needs to be used with caution. Small dosages and limited periods of time as it can lead to osteoporosis and other problems down the road.