symptom and meds journal - 2007/2008

I've decided to make one post where I can keep a record of my symptoms so I can track if they're are improving or worsening. I plan to try and update monthly

Summary thus far:

October 2007
faint rash on nose, aches and pains
rash spread to whole face, neck, chest, some on legs and arms
aches and pains (muscles and joints) worsened
low grade fever
pain under scalp (so weird!)

started Plaquenil (200mg), didn't notice any major changes

November 2007
did about a month of Prednisone (the miracle drug!)
felt alllll better...
but couldn't sleep, started getting shaky hands, ate like a horse, gained weight etc.
still taking plaquenil

December 2007
tapered off the prednisone
symptoms slowly came back
and achy joint here one day, there the next
sore muscles, mainly in the back, neck, shoulders
classic malar rash on nose and cheeks

January/February 2008
general malaise
sore muscles (shoulders, back)
occasional sore joints (fingers, wrists)
thinning hair, receding hairline & almost-bald spots
lesions on leg (about 1/2 dozen) - biopsy by dermatologist diagnosed ... lupus! (surprise!)
rash in ears and just under ears (on jawline), also on right eyebrow and top of forehead at hairline
still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))

march 2008
feeling better, think the plaquenil is kicking in (whoo hoo!)
most joint aches and pains are gone
old pain in lower back/hip area is back (??)
still have skin lesions on face, chest, leg, hand...
mild malar rash, rash above eyebrow and at hairline and jawline
down to a size 2/4

still taking 200 mg plaquenil (also calcium w/ D, fish oil, multivitamin, and fenugreek (for nursing))

end of March 2008
had a pretty bad flare with pain throughout body (started in shoulder blades, very odd) - only lasted around 24 hours - also great fatigue for one day
not sure what brought on the flare, had some tummy issues which may have been a stomach bug or from eating too much sugar/white flour

in general - pain is mostly gone, but skin is worse
face still has malar rash, spread to jawline, hairline
spots on hands, legs, chest, belly
hair loss is worse

started chi gong (like tai chi) this morning (march 21)
working on eating less sugar, more whole grains, fruits and veggies

June 2008
haven't posted in a while because things have been pretty stable

haven't had any pain in a few months

my skin is still bad -- it lightened up for a bit, but now have the rash on forehead, jaw, malar rash on cheeks, rash on back of neck, red splotchy on back of hands and creeping up arms -- starting to agree that sun is a problem and have ordered sun protective clothing so I don't have to become a vampire

hair loss is still there - three baldish spots running up my scalp - am wearing a bandanna most days, luckily they look kinda cute :)



have slacked off on tai chi due to major scheduling changes (P got a job and so I don't have free time anymore in the mornings) -- would like to start again soon

have just stopped taking Plaquenil (June 16, 2008)
started seeing new doctor (Dr. Flowers) and will be getting new treatment plan in the next week or two

am still taking Fenugreek, but that's pretty much it

have been eating poorly in anticipation of new treatment plan including nutritional restrictions (ie. fear I'll never be able to eat cheese again!)

June 30, 2008
Started taking nutritional supplements today - the list is too long to write here.

Current health update:
Severe rash on chest, neck (front and back) and arms and hands. Rash feels like mild sunburn and is red and raised with some peeling parts. It's very uncomfortable and sensitive.

Rash on face is not as bad, but face is still mostly covered in red/pink rash.

Took a walk around noon today and was very tired this afternoon. Not sure if it was sun exposure or lack of sleep due to big storm last night.

No aches and pains, still have hair loss.

Working on reducing sugar and salt from my diet. Will start making herbal tea in the next day or two.


July 5, 2008

Still feeling pretty good. I think my joints in my fingers are slightly swollen but are not painful. I do have pain in my lower rear hip (right side), but it feels like the pain I used to have, long before the lupus was even an issue. I'm hoping to be able to add acupuncture in a couple times a month, and hopefully that will help with this pain. I think it is exacerbated by driving long distances, so will try to minimize long drives.

My rash on my arms, neck, hands and face is still bad. My arms and neck are the worst, red, peely and painful. It hurts and is raw like sunburn and it looks quite awful.

Am taking supplements twice a day. Tried the chinese herbal tea yesterday and it tastes disgusting. It will be hard to drink it once a day, much less twice.

Need to be more strict on diet -- cutting out salt and sugar is *extremely* difficult, so cheating is easier, so eating poorly is easier.