Hi AlwaysRosie & "Des"...
I'm glad to hear I'm not the only one who has concerns about when to get their blood work done. AlwaysRosie, I know what you mean about wondering what your doctor may think if you don't get it done right away. Thanks for giving me another web site to check the blood work/labs. I did look up each of these tests online.
I read that the anti-nuclear antibodies and the anti-DNA are SLE tests. My doctor said he was ordering "some other things" too. The LDH test is to determine cellular or tissue damage. The anti-mitochondrial test is an Immunology test; I read it's a test for chronic cirrohosis (?). Interestingly, the Vibrio test is for syphillis, liver damage, brucellosis, etc. I read that people with lupus can get a false positive result for syphillis. The albumin test is for heart attack, liver disease, and tissue changes. Of course, being a layperson, I don't know exactly what all of these tests mean, but I am pleased that my doctor is trying to find answers, too.
AlwaysRosie, my Mom has Hashimoto's thyroiditis, too. It is controlled with her thyroid med, but she does have to go for blood work often to see if the prescription dose has to be changed. Is yours controlled well with the thyroid medication? That's great that you are being treated for UCTC & SCLE even without positive test results like ANA. I told my doctor that about 1/3 of those with lupus have a negative ANA (I read resources on H/W, thanks). He didn't include the ANA in my labs this time, but I'm not sure why.
You also asked how often I flare, and that's hard to answer because for the past over 1 1/2 years it seems too often. I asked my husband this question today because I get quite confused sometimes, and I am too often too weak (muscle weakness, extreme fatigue) to track my symptoms in writing like I used to be able to. I said to my husband, "Isn't it maybe three days per week?" and he said it's more like four days per week. On an "OK" day like today, I'm able to get on the computer and type. But when I tried to empty and re-load the dishwasher today (after two cups of coffee for energy), the plates, bowls, etc. felt like weights, and I started to get shakey in the limbs and too weak to wipe the counters and do a good job. I am very happy on the days that I am able to get out of the house on my own and run errands, or pick up some things from the drug store (it seems that these days only happen about 2-3 days per two weeks). I'm so sorry for being long-winded; I hope you understand.
"Des", That's good info for me to know, thanks. I have read a bit about the lab work that is normally ordered for lupus (thanks to the lupus resources that the forum moderators post & lupus resources on H/W), and your question about checking for any other ENAs related to lupus like SSA, SSB, Anti-Sm, etc. is very good because he didn't order any of those. I guess right now it's just one step at a time, but hopefully my doctor will treat my conditon based on symptoms and maybe a low dose of prednisone and Plaquenil may help my extreme fatigue, fevers, and improve my ability to live more normally. A client of my husband has SLE, and my husband spoke with her at length about me, and she actually offered to give me some prednisone and Plaquenil. But I wouldn't want to do that right now; it wouldn't be right, but I am going to phone her to thank her for her concern (my husband said that she would like to talk to me).
I'm sure everyone here understands how I'm feeling right now, suspecting and knowing something is not right with my body, but not being officially dx'd and feeling in the dark (except for the official dx's in my signature). Life is much easier when we're healthy, and everyday activities like dressing, bathing, tidying, cleaning, doing chores and runnning errands feel like normal things one has to do daily vs. feeling like "achievements" for me and so many others who are chronically ill. I feel thankful, though, that I used to be a healthy, functioning, working individual vs. a person who is born with a disabling conditon. Does that make sene? I read The Spoon Theory, and I really loved it. After reading it, I sat back and said under my breath "Wow."
Thank you so much AlwaysRosie, "Des", and all of you who took the time to help me. I really appreciate it. For those of you who get chronic fevers or low-grade fevers, do the meds like prednisone and Plaquenil help with the fevers??? Neither Tylenol nor Ibuprofen help lower my temp, but I do find that resting and wrapping a frozen blue ice gel pack around my head helps. Anyone who can help shed some light???