Prednisone me… March 11, 2009

While I was thinking about medicines and long term therapy, I thought I’d ask another related question about prednisone.  I started a prednisone burst just over three weeks ago.  20 mg made a quick difference in bringing up the energy level, dramatically.  The pain was improved, at least for a few days.  Then randomly (or so it seems), the pain kicked back in, but different in some ways.  It was more the muscles, not just the joints.  A switch to Ultram ER helped, and the week I was at 15 mg was the best I’ve had in so long.  I even managed to be social over that weekend and stay up late(r)!  But last week I went down to 10 mg, and within two days, the body was letting it be known that it didn’t like it.  Major fatigue again and the pain just ratcheted back up, to where I was doing the Ultram and several doses of Relafen and still not feeling much relief.  I talked to the rheum, who told me not to drop down to 5 mg this week and to stay at 10 mg until my Monday appt.  So now I’m left wondering what next?  What are other options for treatment if lower dosages of prednisone don’t seem to help? The other times I’ve done prednisone bursts, I didn’t have this problem at all, so that sort of worries me too, but it’s been probably close to 10 years since I’ve had to do a burst.  It’s so frustrating (what isn’t with these things), but I was really starting to feel better, really feeling hopeful about things improving, and it sort of felt like the rug was pulled back out from under me.

Does this happen often with prednisone bursts, where you see improvements in your symptoms but then hit the halfway point or so and see it start to go the opposite direction?

Fibro or Lupus? March 11, 2009

This is probably my fault for being uneducated about my illnesses in many ways, but I struggle quite often with trying to figure out what it is that is causing my issues day-to-day.  Is it the auto-immune system rebelling?  Is it the fibromyalgia kicking in?  When I’m not flaring, which I haven’t really in years, I’ve always just assumed that fibro was really my problem, that it was causing my aches and pains and making me more tired than I otherwise would be.  But, over the past few weeks, I’ve begun to wonder, particularly as I accept the fact I need to look at long term treatments here, medically, at least for a while.  Should I push to try some of the newer fibromyalgia treatments such as Lyrica and Cymbalta?  At the same time, I worry about trying those when it seems like the lupus is the major problem at the moment, but then again, I’m not sure I ro the rheum know the source of the symptoms.

The only treatment I’ve tried and had much success with on the lupus front is prednisone, but it seems to be taking fairly high doses for relief this time, so I don’t know how long that will be an option.  Plaquenil and I didn’t get along well when I tried it back in college, so that’s another option that is probably not available to me, or at least would be a last resort.

Not having had to think about this for about 10 years (but knowing that the options are pretty much the same due to a lack of new drugs for treating lupus), I am curious what others take and do to treat and control lupus flares, both short term and long term.  Has anyone with fibromyalgia used Cymbalta or Lyrica?   Thanks for sharing!

The Spoon Theory March 10, 2009

An excellent, well-written piece describing living with lupus.  Well worth reading and sharing http://www.butyoudontlooksick.com/the_spoon_theory/

How do you handle questions? Sharing a post from another blogger… March 9, 2009

I was reading a blog today from another auto-immune blogger that hit home for me and so I thought I’d share it with more of the internet world.  A lot of what she said rang true and made me think about  the way I handle questions and the way I brush things off quite often.  It just makes me think…what does it make you think?

http://www.livingrheum.com/2009/03/09/how-do-you-handle-uncomfortable-questions-about-rheumatoid-arthritis/