New to the site, questions about meds

General
21

I have to chime back in on the lupus labs. I am extremely familiar with them, as I've lived with Lupus for the last 4 years. I want to be sure we give accurate info about the screening process to anyone who may be going through it or may go through it in the future.

I have a pet peeve, and that is doctors who check Lupus labs (or especially just an ANA one time) and tell people they are fine. If lupus (or any other autoimmune illness is truly suspected, based on symptoms, that person should have serial labs done, over a long period of time, before it can really be ruled out or ruled in. It takes, on average, 1 year or longer for someone with systemic lupus to be diagnosed.

The ANA can be positive with other illnesses besides Lupus, it can occasionally be positive in perfectly healthy people, it can fluctuate to the point that it shows negative on numerous lab tests, and although rare, there is an ANA Negative Lupus.

There are numerous Lupus antibodies, and each one has it's own blood test. Lupus simply can not be ruled out (or diagnosed) based on an ANA result.

When I first had symptoms, and went to a Rheumatologist, based on symptoms alone, he said that I had "something autoimmune", but we wouldn't know what it was without my lab work giving him additional clues. I saw him every single month, and every single month, he did a full panel of lab work (for Lyme Disease, Rheumatoid arthritis, Lupus, Sjogren's, etc...). Every single month for 8 months, my labs were completely normal. The 9th consecutive month of labs finally showed positive for Lupus. Since then, my lupus labs have bounced around. They go up, down, appear and disappear. (I am very active in the Lupus community, and I can tell you that this is not at all unusual, and seems to be the "norm", more often than not).

I have a link for some good information below, in case anyone is interested. If you are being screened for Lupus (or other AI disorders), or have been screened recently, I suggest you familiarize yourself with the screening process, so that you can ensure that your doctor is doing all they can to rule out AI disorders. **PLEASE NOTE: If you read it, please keep in mind: when it explains the ANA and states that 97 or 98% of people with Lupus will have a positive ANA, that may be true. HOWEVER, it does not mean that the ANA is constantly positive. Remember, mine was negative for the first 8 months of screening, and that is not at all uncommon.

The point I really want to make is this: if you or your doctor has a reason to suspect lupus and screen for it, don't accept it being ruled out based on one negative blood test, drawn one time. You can indeed argue with autoimmune blood tests. They are sneaky and they don't always tell the truth.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

Sharon

22

I take Robaxin also.

23

Sharon, thank you so much for that info. No one ever said anything about repeating any of the blood work I had done just before finding out about the Fibro. I'm going to talk to my drs about it next time I see him.

Gentle Hugs!

Dottie

24

From the research ive done (which is a lot since i had a horrible dr for 6 yrs, turns out i was so anemic last april i needed blood transfusions and she put me on iron when there wasnt even an iron level check on the labs)...anyway i was diagnosed with lupus without ever having a positive ana because i ad a false positive syphillis(sp?) test, which is a result of the anti-cardiolipin antibodies i always am positive for, and which caused my two miscarraiges...they are lower when i am not pregnant but always present so the docs that only check the ana aren't doing all the tests they should...i also had an extremely igh anti ds-dna level (10 is positive and i was a 14 in april and an 18 in august) but u of m ran 3 different anti ds-dna levels and said the rheumt that diagnosed me was looking at the wrong ones as the other 2 were fine? Maybe i should get a third opinion? Te meds for lupus are so serious i dont want to take them if i dont need them but with the mitral valve prolapse and syndrome and all the issues with my kidneys(a kidney infection a month since august) i dont know what else could be causing all of this! And is it normal with fibro to after a day of fishing or playing frisbee(two of the most relaxing "sports" i can think of, to be knocked into bed for at least 2-3 days? My u of m rheumy says yes, but i just never thought "just fibro" could be this bad.....now i am realizing it is!!!

25

Sarah, it sounds like you had a lupus diagnosis, now U of M is telling you that the diagnosis was wrong and you don't have lupus? Despite having several abnormal lupus antibody tests, plus the false positive syphilis test? Funny, that's the same thing they tried doing with me.

Please get another opinion. Most Rheums rely heavily on that ANA test, to the point of being ridiculous. You now have two opinions that are totally opposite, and you need to know which one is correct.

Good luck,

Sharon

26

Thanks Sharon, I go to my reg doc tuesday, ill ask her wat she thinks, and like i said she has been great!! Sorry about the bad spelling on here, im either typing too fast because i'm frustrated or my keyboard is skipping keys :)

27

I am new to this site also. I feel it is a very supportive one with people who have a whole lot in common. Norcos seems to be a combo of Hydrocodone and Acetaminophen. I am not sure of the dosage you take but I take Vicodin 750 which is a similar drug. The doctors refuse to give me anything stronger. I would love for all of them to have this for a month and then tell me it is strong enough to take care of my pain. lol

It is very hard to get medication to relieve your pain without getting addicted to it. I look at it this way. That is secondary in my book since there is no cure for fibro so what difference does it make if I get addicted to something that will give me a better quality of life? I can't seem to get that through to my Doctors. I am sorry you are in the position that you need something that will mess with your sobriety. I am sure you worked hard to get where you are right now. I guess it is kind of like a double edged sword for you for that you have my sympathy and understanding.