I thought I was having a reaction to Cipro when my body started crippling and I would have spots of my body that will go numb and tingling. So I went into my Dr. she ran blood and I came back with a positive ANA and it showed that I was in a acute flare. They are thinking it's lupus but I need to get more tests. I was wondering how long do these flares last? They are treating me with steroids.
Sadie, hi. I believe flare duration & severity vary widely in lupus & its close cousins.
But ANA alone doesn't diagnose any condition, and it can elevate for more benign reasons (a passing virus, a family tendency, simple aging, etc.) Have you seen the sticky posts (permanent info posts) at the top of the thread list? The one with classification criteria has 11 numbered criteria. To be dx'ed with systemic lupus, you generally must meet 4 of the 11 at some time, not necessarily simultaneously. Once you meet a criteria, it s/b considered permanent: think of checkmarks in indelible ink.
Don't know about you, but I found those criteria odd when I first saw them. Maybe that's because they don't describe the things most common in lupus. Instead they describe things that distinguish lupus from other conditions.
Did your dr. do lots of specialized tests BEFORE you started steroids, so as not to mask anything on your test results? Have the steroids helped? Anyway, I hope your drs. are quickly accumulating useful info. Post updates when you can, OK? Warm wishes, Vee
P.S. There's also a form of lupus called drug-induced lupus (DILE). The good news about it is that it almost always resolves when the offending drug is discontinued. Not sure if Cipro is one of the known culprits---but will post again if I find something.
Last edited by VeeJ; 10-13-2010 at 08:34 AM.
Reason: added P.S.
No I have not seen the sticky posts but, I will go take a look. As far as tests ran before the steroids. She ran tests to see if I have a viral or bacterial infection, other than the UTI things came back negative. She also ran an arthritis panel that came back negative as well. The only thing she said was I tested positive for Connective Tissue Disease and that my Kriatin (not sure how to spell) level was a +2 and showed I was in an acute flare. As far as the Cipro I have been off of it for almost two weeks now. I never in a million years would think to think of Lupus but in reading things now maybe... I don't know.. I had a rash that was on my chest for months I even had my esthetician look at it and she said it was a rash not acne. I finally put hydrocortizone cream on it and it went away. About four months ago I got the same rash on both sides of my neck and chin and it's still present but reducing now I'm on steroids. Also I have had frequent UTI' s that take forever to clear and then when they do, I end up getting them again. I went in for a scope a year ago and they found no reason as to why. Does high acid in the urine mean anything? Oh and a month ago I had these soars on the back of my tongue i went to insta care and they said it's cause I had a water induced ear infection. I don't know if any of this even means a thing.. All I know is this was the scariest thing I have ever been through! Much scarier then Thyroid Cancer (which isn't that big of a deal). Do you know if Auto Immune runs in family? My sister has MS and my dad had an immune disorder that the Dr.s could never classify or figure out why he had it. He was in and out of the Hospital for 10 years sometimes months at a time. Sorry for rambling....just curious your thoughts. Btw.. steroids are helping, Ive been on sense Friday.. I'm still in pain and tired but I'm able to function
Sadie, I'm only a patient, so please read below in that light, and then discuss with your drs. properly, OK?
Is this dr. a rheumatologist? They're specialists for lupus & similar conditions.
Which test(s) suggested connective tissue disease? (You should get a copy & start your own file, esp. while you're seeking answers.) One hallmark of lupus & similar autoimmunes is that your immune system is mistakenly producing "autoantibodies" that are directed against your OWN cells. Only two autoantibodies are considered "very diagnostic" of lupus: anti-ds-DNA and anti-Sm; but there are are raft of others also possible in lupus. (For example, I tested positive for anti-Ro, but I had lupus-specific rashes & many other ongoing issues...so lupus it was.)
Which "arthritis panel" came back negative? What forms of arthritis was it looking for? (Tjhere are more than 100 kinds of arthritis.)
Was it creatinine that was elevated in bloodwork? I think BUN and creatinine indicate that kidney function is "off", but I don't know if lupus is the ONLY things that can cause elevated readings in bloodwork. And I *think" urinalysis is considered a better test for lupus-related kidney problems. Was urinalysis done?
Rashes are common in lupus, BUT the rashes mentioned in the 11 criteria are not the ONLY ones possible. (I got caught on this "minor" point.) The criteria cite malar (butterfly on face) and discoid (tend to scar &/or depigment). But there are many more lupus-specific rashes: SCLE annular (targetlike, tend not to scar/depigment), SCLE psoriasiform (looks like psoriasis but isn't & tends not to scar/depigment), tumid, bullous, etc.
To determine if a rash is lupus-specific, it can be biopsied by a dermatologist or dermatopathologist. They do a skin punch, look for cell changes under the microscope, then apply special stains to look for a pattern that's peculiar to lupus.
Oral ulcerations are common in lupus, but I *think* they favor the hard palate (the bony parts of your mouth), as opposed to tongue.
Fatigue & pain are certainly seen in lupus. In fact, those are probably the two most common symptoms!
I think autoimmunes tend to run in families. If your close blood relatives have one, you are more likely to have one, when compared to the statistics for the general population.
Sadie, most important of all is this: if this does turn out to be lupus (and I hope it doesn't), please know that, with proper treatment, many people can remain relatively mild. Whom do you see next? Anyway, do keep us posted, OK? Bye for now, with my best wishes, Vee
Last edited by VeeJ; 10-13-2010 at 04:44 PM.
Reason: added sentence
Okay so here is where things stand for me now. Yesterday was my last day on a 14 day course of steroids. My pain is still present (not as extreme as before) I have now acquired a cold and lost my voice and still extremely tired. I had my first appointment with the Rheumatologist on Wed. I have to say I felt very frustrated. Not that age matters but, first he probably in his late 70's and semi retired. He brought out his old fashioned tools to check me out. I didn't know how to answer his questions. He for instance would touch my wrist and say is that tender..well at that moment no but, an hour ago it was.. Do you know what I mean? So I didn't feel like he heard me really saying it hurts everywhere at different times. My knuckles, wrists, elbow, shoulders etc.. he also kept asking me if my heal hurt and it never has. I wonder what that was about also my Achilles tendon but that too has not ever hurt. I told him prior to this flare the only joint pain I had was my lower back, neck and hips. He also asked about my fingers and I told him prior to this they from time to time get very cold and white but never blue or black. I also have numbing when this happens. He left the room and came back with a pamphlet on back and neck pain and told me exercises I could try. My husband said well what about the pain everywhere else? Anyway, he ordered more tests and I see him next Wed. I was curious about when you mentioned if my tests were ran prior to steroids. These new test are now being ran with me on steroids. Also I hade a uranalysis ran again a week ago to see if the UTI cleared. It did clear but they said my urine had cloudy crystal like matter in it and another high PH of 8. My uncle is a Urologist and is bothered by my PH in the past. He is in Hawaii and I haven't had a chance to tell him about my most recent. This Dr. did order another UA looking for CC,Cult and WBC. Here is the blood test he ran as well. Sed RAte,Auto (ESR), ANA Scr?Titer, CRP and B HLABZ7. Just curious your thoughts and if it looks to you he is running the right tests.
Thanks again for your help,
P.S. - If it were drug induced I have been off the medicine for 3 weeks, wouldn't that be sufficient time to clear the system?
Sadie, I'm only a patient & no whiz at tests. But I think sed rate, ESR, and CRP (C-reactive protein) measure inflammatation BUT can't pinpoint its cause. Also, I think CRP is a newer test; it may be more suggestive (not "proof") of certain autoimmunes.
ANA is antinuclear antibody, but I believe it's only a threshold test. Here's why: it can be positive in many conditions, thus, in & of itself, can't diagnose anything. When ANA is positive, it's probably the NEXT round of tests that can be more revealing. These would be ones for specific autoantibodies, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, rhumatoid factor, etc. (You'll see them all listed in the "sticky post" about "test results".) Certain autoantibodies correlate to certain inflammatory conditions, so finding one or more specific autoantibody can narrow down the diagnostic possibilities.
I believe drug-induced lupus (DILE) can occur even if one has been off a drug for some months. I don't think the problem is the drug being in your system. Instead, some drug has put your immune system in hyperdrive & caused it to create antibodies that attack your own cells. (But I don't know if Cipro is even a likely culprit.)
Your description of your appt. made me wince... OK, smile, too. When your husband asked him to comment on all your OTHER pain, was he really pleasant to your husband? My husband accompanied me to one appointment, and I was disbelieving that the rheumie paid much more attention to HIM than to ME. I couldn't even LOOK at my hubby, because I feared we'd break into hysterical laughter. (Sadly, we've been known to do that at inopportune times.)
I agree that a doctor's credibility has nothing to do with his/her age, instead on whether he/she can focus on your issues, make sense, etc. I can see why you left wondering! But since the dr. ran more tests that could prove revealing, I hope you talk to your uncle, and go back at least once, to get your new results. (You should ask for copies for your files.) Drop more updates when you can, OK? Sending you my best wishes, Vee
Last edited by Administrator; 03-23-2012 at 10:37 PM.
Sadie, I'm writing to CORRECT what I wrote earlier about ORAL ULCERATIONS. I'd said they favored bony areas, which was WRONG. Actually they can affect ALL parts of mouth: gums, tongue, underneath tongue, hard palate, etc. Sorry for my earlier misinformation, sincerely, Vee