my elbows hurt. Why is lupus such a weird disease?? Sometimes my scalp hurts, then my shoulders, ouch, my neck, oh look, ow, my thighs hurt...and today, it's my elbows. This disease is so strange and inconsistent.
Other lovely stuff that's going on includes the fact that I'm losing my hair. My hair has thinned considerably over the past year and a half, but I think this may be serious this time. I'm taking Imuran, which is a chemo drug, so I'm not surprised my hair is falling out, but, ummm, it sucks.
I went to my (new) general practitioner doctor last week because my chest had a mild aching feeling all week, and I was worried it was pericarditis (inflamation of the sack around the heart). The doc did some tests, and it looks like everything is ok...now I'm guessing it is just an acid reflux/heartburn kind of thing. Ever since I was so sick a few weeks ago and then started taking the Imuran, my tummy and insides have been feeling all wacky, so this isn't a big surprise.
One question that has been floating around my head lately - could the Plaquenil have actually been causing my terrible rash (it certainly wasn't helping...). I went off the Plaquenil the same day I started taking the Imuran, and the rash went away very quickly. Everything I have read about the Imuran says it takes at least 4-6 weeks to kick in, so if it had an effect on my rash, it would have been unusually fast to start working. Anyway, something to ponder.
I have a doctor's appointment on Wednesday, I will be discussing test results with Dr. B.
1 comment:
Hi Kristin,
I was diagnosed with lupus sle on my 21st birthday - at the emergency room. I had similar symptons to you: facial rash, aches and pain, low grade fever, dehydration, loss of appetite. This was back in the mid 90's and information on lupus wasn't as plentiful and accessible. The dr. put me on plaquenil, prednisone, and a high dosage of ibuprofen. He explained that the plaquenil could take some time before it's effective and so had me on a couple of other drugs in the interim.
I've been on plaquenil since then with the exception of a couple of breaks, which resulted in flares. I thought that plaquenil just wasn't doing anything for me and decided to quit the drug on my own. Bad idea. The second time was under the care of my current rheumy. I asked if I could start tapering off the drug. With his permission, I started taking 2 less pills a week for about two weeks and ended up with pericarditis. (Incidentally, I have lupus sle with kidney involvement too.)
With all the years of managing this disease under my belt, I've learned to respect the drugs that I'd been prescribed. I've also learned to be proactive in my health care. Lupus does suck. But it's possible to live a normal life.
I am looking into accupuncture as an alternative healing method, but have not been aggressive in my search. I live in northern CA, so alternative medicine is definitely available.
Coincidentally, prior to my diagnosis, I was seeing a Chinese herbalist and was drinking the awful tea twice a day before she (Chinese dr.) prompted my mom to take me to the emergency room. She told us that she knew the name of the disease in Chinese, but didn't know how to translate it to English (literally means "red-rash wolf disease"). She explained to us that I needed to go see a western dr. to get my disease under control - again because of the condition I was in.
Unfortunately, I never went back to see her because I couldn't bare to drink the tea anymore. I found it very interesting that the herbalist sent me to see a western dr. I do believe that it's because eastern medicine, though less toxic for the body, tends to be slow in its effect (healing from the inner to the outer). And western meds, though toxic, are quicker. So perhaps control it first with the western meds and then look into a more holistic approach (while continuing the other meds).
I have many other stories and would love to share them with you. Please let me know if you're up for listening to them - and to share your struggles with me as well. Often times, I feel alone in my struggle with this disease - especially when I appear "normal" to everyone else.
Liz
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