well, dr no tests is resorting to blood tests. blech.

[mopinko]

been feeling quite shitty, (fibro) and seem to have a shadow of a butterfly appearing on my face. couldn't figure out why it was only one side, till i realized that my left side got exposed to sun while driving. did that a lot last summer. now that it is warm, and i have tried to soak up a little sun (vit d deficient), pink puffiness is blooming on the other side.
so, went to see the rheumie today, and although he said he thinks it is just rosacea, he ordered an antibody panel, and some other goodies. he is extremely averse to doing anything to make me feel like a sick person, or anything that might turn me into a "head case", so, blood tests is a big thing.
this is rheumie #5, and i think it is 3 for lupus, and 2 for something else. he is definitely in the something else side.
i have also been battling acid reflux and maybe related asthma. falling apart at the seams, i am.
tests will take a couple days. ah waiting. so much fun.

[mopinko]

1. well, no real answers from the blood tests.

mostly fine. ssa still elevated, while ssb is normal. strange combination. no explanation.
it is an odd place to be that you are disappointed with normal test results, but an answer would be helpful. even a bad answer.

[mopinko]

2. prescribing savelle

recently approved for fibro. cousin to effexor and cymbalta. ??? at this point, i will try anything.

[hedgehog]

3. As long as you're getting blood work, get your serum Vitamin D checked.

I avoid the sun like a vampire because I burn, have rosacea and get migraines. A lot of people with lupus avoid the sun to prevent flares, but Vitamin D is increasingly being seen as a primary anti-inflammatory.

[mopinko]

4. already on that one.

my pcp checked it a couple years ago because my bone density was borderline. but the level at the time was at the low normal boundary. several months ago we checked it again and the level was the same but the norms had changed. so we did the once a week industrial strength stuff, and got it up where we wanted it. so now we are trying to figure out what i have to do to keep it up.
even though my skin doesn't really like it, i have been trying to suck up some sun now that it is nice out. it just feels good, and i don't have enough of that.

i have to dig through my records. i think he missed the connective tissue antibody. it was elevated in the past, but i don't think he checked that one.

transitioning to a new drug and feeling like shit in the low spot here. sigh.

[marybourg]

5. That's interesting. I was unintentionally taking >4000 IU of vit D

a day, and my autoimmune mouth sores cleared up for the first time. I dropped back to 1500 IU and they're still 90% better. Can you point me to any research on vit D as an antiinflammatory?

[hedgehog]

7. The research is on-going

http://clinicaltrials.gov/ct2/show/NCT00779909

http://www.sciencedaily.com/releases/2009/05/090520114657.htm

http://www.ingentaconnect.com/content/ben/crr/2007/00000003/00000002/art00006


There are a lot of nutrition sites pushing Vitamin D, but I have more confidence in the hard science sites.

[marybourg]

8. thanks! nt.

[mopinko]

6. no go on savella.

you titrate up over a week, and at day 4, my sleep has been shattered. pain is up. in a complete fog, with an art fair to do this weekend, and people coming over tomorrow night.
enough of that.