Posted 7/10/2008 12:39 AM (GMT -6)
I do not have kidney involvement either, although for the past few months my kidneys have been spilling protein on and off. My doctor said that's a sign of the Lupus still being active. I was diagnosed 2.5 years ago, and also had a pulmonary embolism which was when I found out I had APS as well.
For about a year, I was going up and down a lot. In regards to the lab results and how I was feeling. When I started the Cellcept, there wasn't much improvement since I was still flaring on and off which is probably why I said I didn't notice such a big difference. My doctor slowly increased the dosages too. I started off with 500mg a day for about a month, then to 1000mg the following month, to 1500mg, to 2000mg, and so forth. Like I said, the only difference I really noticed what when I went up to 2500mg my hair started falling out.
It wasn't until I started started my rituxan/chemotherapy treatments that I really started noticing a difference. Before that I wasn't able to taper the prednisone. And even though it doesn't seem like much, it was the only way I got down from 10mg of pred to 6mg now. I think that was when I finally found a combination of medications and treatments that actually worked for me.
Anyhow, the tech says that it does effect the INR and so you would have to watch it closely. I think because I increased at a slower rate, it didn't really change my dosage of coumadin to much But I still get everything checked out when I'm supposed to and stay on top of things.
As for the lab results, here's the list of tests they run every month:
protein/creatine urine, urinalysis, creatine/serum/with glomerular filtration rate, total hemolytic complement, c3 complement, c4 complement, dna antibody, INR, CBC, white blood differential, dna antibody titer.
What the tests actually mean I'm not exactly sure. But my health insurance allows me to check the results online as well as compare past tests results. It tells me what the normal range is, and what my numbers are. So I can see when I'm flaring, the numbers go crazy. And when I'm doing better, the numbers just look better and get closer to the normal range.
And I totally know what you mean. I got diagnosed right after my 21st birthday, and I'm only 23 now going on 24 in October. It's going to be a long road ahead of me.
Also, I just thought of something. Are you sure you're able to take Advil along with coumadin? Isn't Advil similar to Ibuprofen and has naproxen in it right? It's one of those medications that you should avoid. Or at least that's what I was told.
I would ask your pharmacist about it the next time you take your INR.
I see Tylenol listed on there too. I'm also on Midrin for migraines and the active ingredient in that is acetaminophen. So I got my okay from my doctor and pharmacist for it.
I'm just scared of the advil/ibuprofen/naproxen because I had a really bad reaction to it and it gave me ulcers and I was severely anemic because of it. And had to have an endoscopy and be in iron supplements for a few months before my counts returned to normal.
But yeah, sorry for going on a tangent. Best of luck!
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September