singingpatient

Close Lupus

Became ill June 1992, diagnosed May 1993, got canned from my job at a retail music store for being ill (isn't that illegal?). Have worked for myself since- i control the hours. My kidneys have gone into failure 3 times. I've never had to get dialysis or transplant, and, despite what the docs said at the time, they always return to 100% function once the disease gets back under control. I've had 2 strokes- have fully regained function. there's more but there's a word limit :)

Treatments

Acupuncture Working / Worked

Cellcept Working / Worked

I'm on cellcept, have been for 1 1/2 years, to save my kidneys and hopefully rpevent yet another flare. i've had 3 major flares all attacking my kidneys, one involving a stroke and neurpathy, all involving anemia. i really fall apart when the lupus takes over, so if cellcept can prevent a 4th flare, that would be great. in high doses it gave me diarrhea so we had to cut from 2000mg a day to 1500. i'm still concerned about developing lymphoma because of cellcept.

Chelation Therapy Working / Worked

i felt like wonder woman when i was getting chelation. insurance does nto pay for this. i went twice a week for about 3 months while also on prednisone and wearing prescription hose for my swollen legs. after a couple months my ankles reappeared and i didn't need the hose anymore. and i could wear shoes again (yay!)

Cytoxan Not Working

i could not tolerate the way I felt for several days after cytoxan, so i did not stick with it. i was also nto sure i wanted to be sterile, even though that would save me and my hubby lots of dough on condoms... :)

Plaquenil Somewhat Helpful

I took it for 6 months but was so freaked out reading the warnings about going blind (I was only 25!) that I stopped taking it. I used it to help wean off the prednisone

Prednisone Working / Worked

I hate prednisone but it really really works. i try to never be on it for more than 9 months because I like having my bones intact. and my hair. and my sanity. but because of prednisone i also have my kidneys intact. you just can't stay on it indefinitely or it will destroy you!

Prayer Working / Worked

i believe in prayer. i also believe if i don't get some pain meds for some relief, i'll lose my mind. i also believe without divine intervention and guidance, I would nto find the awesome healers i have found to help me get off the meds and really get better.

Ibuprofen Working / Worked

boy do i love me some advil. but i was taking so much of it that it was detrimental to my kidneys.

Hydrocodone Not Working

this i believe is vicodin, which gives me a rebound headache. didn't find ti helpful at all.

Naproxen Not Working

didn't work for me at all.

Neurontin Working / Worked

i was in so much pain from nerve damage. the neurontin really worked when nothing else would touch the pain. coming off hte neurontin was really difficult. during withdrawal, i was totally OCD! but if i had that kind of pain again, i would totally use neurontin.

Aspirin Somewhat Helpful

i'm tkaing this to avoid another stroke. well so far no stroke. so ... i guess it's working? :) i'm taking lots of other stuff too.

Lasix Working / Worked

this was for edema (swelling) and not peeing. it worked amazingly. it also gave me some diarrhea, but we lowered the dose and i was fine. in combo with prescription panty hose and walking/ swimming, it got all that stagnant water out of my legs. very effective- and cheap!

Positive Thinking Working / Worked

frame of mind. very important. though it is also important not to deny your feelings. it's a balance. gratitiude is maybe a better word.

Support from Friends & Family Somewhat Helpful

depends on who you go to for support! my family was a disaster btu i found friends who are worth their weight in gold and then some.

Ultram Working / Worked

this worked great but they ahd to take me off it because i was on paxil. the combo can cause seizures! big oops to my GP!

Laughter Working / Worked

Lisinopril Working / Worked

Oxycodone Working / Worked

i believe this is percacet and it works very well for me. i often only need to take 1/2 of a pill to get headache relief. it does cause constipation though.

Elavil Not Working

wow. i took one pill and had nightmares all night. once you find the right mood regulator, don't monkey around and try others.

Sleep Working / Worked

extremely important.

Tylenol Not Working

only works for fever for me, doesn't touch pain. and it causes liver damage. opiates are much safer but docs freak out about giving you those.

Physical Exercise Working / Worked

used wisely, this makes a humongous difference. after a stroke, i did baby bounces in the pool until i was strong enough to swim and walk.

Meditation Working / Worked

this really works for helping me slow down my mind so i can sleep. having lupus creates anxiety for me, so this is a good antidote.

Faith Working / Worked

Anti-Inflammatory Diet Working / Worked

Chiropractic Adjustment Somewhat Helpful

this only gave me relief for a few hours.

Psychotherapy Working / Worked

great way to be able to talk frankly about things that folks around you can't handle.

Fish Oil Working / Worked

Clonidine Somewhat Helpful

too much clonodine makes me sleep all day and all night. it slows your heart down. that can be dangerous.

Heat Working / Worked

ahhhh heating pad.

Paxil Working / Worked

tried others, this worked best for me. everyone is different though. i try to be on as low dose as i can otherwise it squashes my creativity.

Wellbutrin Not Working

this one didn't work for me. it made me angry.

Vioxx Working / Worked

oh boy this worked great for me. but i did have a stroke around the time i was taking it.

Norvasc Working / Worked

lowers blood pressure. but can make ankles swell, and i already had swollen ankles.

Love Working / Worked

Ativan Working / Worked

finally i can stop thinking and get some sleep!

Trazodone Not Working

didn't help me fall asleep, but i was so hung over the next day i stayed in bed til 5pm.

Writing Working / Worked

this is an awesome release, and helps me sort out my feelings and all the decisions i have to make

Massage Working / Worked

massage works great but a lot of people won't do massage on you once they know you have lupus :( so i don't tell them!

Gluten Free Diet Working / Worked

hard to do at first, but really really works.

Holistic Health Working / Worked

Art Working / Worked

TENS Working / Worked

i got one from a friend.

Procardia XL Working / Worked

for blood pressure. if it has side effects, i haven't noticed!

Music Working / Worked

Pets Working / Worked

Walking Working / Worked

Melatonin Not Working

Ambien Not Working

Crying Working / Worked

Eating Healthier Foods Working / Worked