Lupus Medication Overload
My wife and I made our eight-hour trek to UCLA Medical Center and back today, with nothing but frustration to show for our time. I know the doctor is doing her best, but we feel that things are no better than they were two years ago when we started going down to the UCLA lupus specialists.
My wife is sick of all the medications she has to take, and often wonders if the risks associated with many of these medications are worth the trouble. She is constantly approached by snake oil salesmen who claim that their herbal supplement will cure lupus. It’s all very discouraging.
Jeff, it sounds like a lot of work getting in to see a real lupus specialist, with not much to show for it. No wonder you’re both frustrated and discouraged. I hope some of that has gone away now; the long drive alone sounds like it would be very tiring.
You got me thinking about ‘empowerment’ vs. frustration and discouragement. A couple of ideas come to mind.
One is to sign up for Google News Alerts relating to lupus. It’s such an easy way to keep up with the latest research developments, as well as a steady source of stories on how others are living with lupus. Getting daily lupus-related news alerts reassures me I’m not missing anything important. I think it also gives me better perspective as a patient. It helps me understand what rheumatologists are up against. They must get pretty frustrated at the lack of new, effective lupus treatments too. But there have been some very interesting research results lately on the disease process, suggesting new avenues of approach to treatment. That keeps me hopeful–especially for those living with more severe lupus, like your wife.
The other idea is to keep notes on daily ups and downs (I’m sure you’re already doing this). I wonder if your wife has noticed a cycle of symptoms, as I have? Every once in awhile I wake up feeling much better than usual, more energetic. Checking my notes, I find this happens about every four weeks. My journal has helped me more clearly see a connection between meds and symptoms too. Reviewing notes on the meds I’m taking (or often trying to cut back on) keeps me honest with myself, and helps me give my doctor useful feedback.
Armed with knowledge from these two sources makes me feel at once more proactive and more patient. (Not to mention better able to spot and steer clear of those ‘snake oil’ pushers.)
Thanks for sharing your experiences.
Wendy
Thanks for the tip about Google news. I can’t believe I haven’t already done that.
I don’t keep a journal, and my wife’s attempts to do so are sporadic at best. I keep notes about doctor visits and changes in medication, but I should create a journal or a database that I could view trends and patterns.
Thanks so much for your comments and suggestions.
hey again jeff
i just found your site today.
yeah lots of folks think they have “the answer” to lupus.
i ahve definitely found some alternative stuff that has made things better, and even made me about to reduce, and at time, eliminate medications. and i’ve been super sick, so that’s saying something.
i listed some of the things i’ve done on my blog
http://lupusandhumor.blogspot.com/
and i also found a book useful:
lupus: alternative therapies that really work.
this site has some good ideas
http://www.curezone.com/diseases/lupus/
and out of everything i’ve done i’d say acupuncture and the candida diet were the most effective (well OK prednisone was hte most effective but i HATE prednisone and do the other thigns so i can get off of it before i go permanently nuts)
i don’t know that there really is such a things as a lupus specialist. there is such a thing as someone who doesn’t know jack abou lupus, but most of your rheumatologists just picks a few drugs off the menu and draw blood regularly til you stabilize, then try to wean you off them. i’ve been dealing w lupus since 1992, and that’s pretty much the regimen. except some drs like to do a LOT of tests. like bone density, mammogram, sonograms, bone marrow, etc etc etc. sometimes i just say no. i’m not a guinea pig, i have limited money and time and energy, and if the test result isn’t going to change my treatment, then no thanks.