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Old 09-28-2007, 09:31 PM   #1
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How long can you have symptoms of Lupus before tests come back positive

How long can you have symptoms of Lupus before tests come back positive

 
Old 10-04-2007, 04:09 AM   #2
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Re: How long can you have symptoms of Lupus before tests come back positive

When I was finally diagnosed with lupus my specialist told me that you need a series of blood tests because only 1 in 3 or 4 may show any signs of positive result. That is why lupus is so hard to diagnose. They don't only go by blood tests but the patient's symptoms over a period of time etc. I had my first blood clotting episode 26 years ago and they only told me about 7 years ago it was lupus! it now affects other parts of my body and I have SLE.

 
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Old 10-04-2007, 03:18 PM   #3
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Re: How long can you have symptoms of Lupus before tests come back positive

Hi. I had problems from early childhood, including two acute episodes when I was very young (severe pneumonia, then encephalitis). I had joint & long bone problems (shins & arms) from age 13 on. Then severe GI problems from age 25. I didn't have rashes until my late 30's, and these matured from an early papular form to full-blown annular (circular) lesions over a period of eight years. I was Dx'ed at age 47 with the SCLE "subset" of lupus.

But honestly? I'll never know whether I could have been Dx'ed earlier, meaning, was there enough there to support a Dx, had someone thought to run the right blood tests, at the right time? Or done proper skin biopsies, meaning proper for this condition? I'll just never know, really.

But I am sure that the first five or six dermies I saw BLEW IT. They didn't recognize the SCLE rash type, causing them NOT to order immunofluorescent stain tests. Their lack of up-to-date knowledge cost me at least 4 years.

Also, I was ANA-negatve, which is true of maybe only 30% or so of those with SCLE. So any dr. who did run the ANA may have just stopped right there, without calling for specific autoantibody tests like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc. It was anti-Ro that I turned positive for. I never even asked for bloodwork copies, so trusting was I! (Duh!)

There are so many symptoms & so much variety from person to person! So I only throw these thoughts out to convey some of the pitfalls I encountered. Knowing what I know now, I'd have bolted to a teaching hospital on my second big rash. But that's hindsight... But I hope something here perhaps gives you something to mull over. Just give a yell if you want to discuss anything here, OK? Best wishes to you, Vee

 
Old 10-04-2007, 04:43 PM   #4
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Re: How long can you have symptoms of Lupus before tests come back positive

Hi Veej, could you explain the types of rashes you experience? I have rashes on my neck mostly and I treat them with steriod creams. The rashes come and go and they are itchy. They are red and patchy.. Actually my whole body has been itchy lately, however I have very recently switched to the brand name Plaquenil instead of the generic version... I am wondering if these newfound rashes are related to the meds or the condition?? I have been dx with connective tissue disease, however it seems a lot more like lupus.....it would be interesting to know what SLE rashes are like??

 
Old 10-04-2007, 05:11 PM   #5
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Re: How long can you have symptoms of Lupus before tests come back positive

Hello, I am new to this board, not to Lupus I was dignosed in 1997 after being tested positive ana by 3 different doctors my ana were high 1:320 I didn't know what was Lupus at that time. I had all the symptoms I also lost my first baby to Lupus. I actually started to have the symptoms when I was deployed during operation joint endevour or Bosnia Mission. What really puzzle me now is that I still have the symptoms but since I have been taking plaquenil my ana's has been negative can anyone answere me if someone is going through the same experince?. I am not complaining my Lupus is managable, but is puzzeling that my blood work comes back negative. Now I also developed RA and at the same time I was dignosed with Lupus I was dignosed with Fibromyalgia. Thanks for all your answered and support.

 
Old 10-05-2007, 01:37 AM   #6
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Re: How long can you have symptoms of Lupus before tests come back positive

Janmar123, Following are lupus-specific rashes. Much of this info is from Dr. Daniel Wallace's lupus hardcover, found in most libraries & bookstores. 1 thru 3 are the common lupus rashes; 4-6 are rare. FYI, most of these typically do NOT itch. Then following the lupus-specific list are some skin conditions that aren't lupus-specific but are more common in people with lupus.

1. Discoid. These scar &/or depigment. Seen in people classified as having DLE, but people classified as SCLE & SLE are also "eligible". ANA is positive roughly 50% of the time in people classified as having the DLE subset.

2. SCLE (two distinct rash types). These tend NOT to scar or depigment. Are seen in people classified as having SCLE, SLE, and DILE (drug-induced lupus). About half of those classified as having SCLE meet 4 or more of the criteria for SLE, but they tend not to meet the worst criteria; for example, kidney & CNS problems are thought to occur less often in SCLE than in SLE. Patients tend to be VERY photosensitive; and the lesions tend to be resistant to skin creams & antimalarials. Anti-Ro is the most common autoantibody found, but perhaps 1/3 also have positive rheumatoid factor. ANA is positive only about 70% of the time in people with SCLE.
2a. SCLE annular. Immature form is red raised "papules". In mature form, the papules expand into circles (usually smaller than palm of hand), before expanding outward & losing circularity.
2b. SCLE papulosquamous (a/a psoriasiform). This form looks like psoriasis but isn't.

3. Malar (butterfly). This is the classic facial rash heavily associated with classic SLE, but it can been seen sometimes in SCLE & DLE, too.

4. Bullous lupus. Rare. Large fluid-filled blisters.
5. Tumid lupus. I *think* this is a DLE variant, in which a larger skin area becomes affected, as opposed to multiple small lesions. I've seen pics of it on the throat area.
6. Panniculitis (Profundus). Rare. Inflamed fat pads underneath the skin create bumps, but without signs of a surface rash.

Additionally, people with any kinds of lupus are also more prone to certain non-lupus-specific skin problems. e.g., pigmentation changes, including vitiligo; urticaria (itchy hives or welts); cutaneous vasculitis (red or black dots or hard spots that can stay mild or can ulcerate); purpura & ecchymoses (black & blue marks under the skin; can be mild or serious); Raynaud's (fingers turn red, white or blue, due to cold, stress or vibration); and livedo reticularis (lacelike mottling under the skin).

Janmar, there are probably some I've left out or have never heard of. In your shoes, I'd want a dermie to look at this itchy neck rash. It may not be a lupus-specific rash. Or, as you say, you may have a skin reaction to your old generic antimalarial. Also, I've read that overuse of steroid creams can thin the skin, over-dry it & cause it to itch. Just curious: did your neck start to itch before or after you started using a steroid cream on it? Also, are you blocking sun religiously?

You could find pics of many of these using the SEARCH BOX to the upper left; but, again, only a skin biopsy is definitive.

Hope there's something here that helps & that you get answers from your drs. soon. Hang in there! Sincerely, Vee (P.S. I had the SCLE annular form on my upper arms, back & torso, about 4 new batches a year for 8+ years. My rashes did NOT itch. I've been rash-free for 7 years now, since starting Plaquenil & avoiding and blocking sun religiously. Also, all my life I've reacted to certain fabrics, like wool; and to certain soaps & fabric softeners; gotten itchy patches on my hands; etc. But I don't believe these last things are lupus-specific---only my annular rashes were, I think.)

 
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Old 10-05-2007, 02:18 AM   #7
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Re: How long can you have symptoms of Lupus before tests come back positive

Jamusafl, Welcome! Obviously I'm just a patient, one who reads; but that doesn't "qualify" me for anything but reading a lot. But here's some of what I've read, for what it may be worth.

Have you seen Dr. Daniel Wallace's lupus hardcover? It's in most libraries & bookstores. Dr. Wallace says a couple of interesting things. One is that most dr. offices are NOT equipped to do reliable antibody testing (lack of national standards, inexperience, etc.), and that reliable rheumatology labs are a much better bet. Also that ANA can fluctuate with clinical improvement, but that the correlation is what he calls "weak at best" & therefore NOT a good gauge of disease activity.

But in complete contrast to ANA, Dr. Wallace says repeat testing for OTHER things IS of value, because these other things strongly correlate with serious disease activity. Here he cites anti-ds-DNA, C3, C4, and CH50.

I bet another author, Dr. Robert Lahita, covers this, too. Or, could your rheumie explain it, including, in your situation, what changing RF values mean?

In my own experience, my anti-Ro level decreased with treatment. (But Dr. Wallace says repeat anti-Ro testing is of little value.) Yet I still have flares, but with fewer problems, less severity and shorter duration. My rheumie runs bloodwork & urinalysis at least 2x yearly. BUT, based on what I just read, I'm guessing he does this more to look for NEW things that would flag a serious expansion, rather to watch less useful things like ANA, anti-Ro, etc.

Maybe others can chip in more. I hope you're doing well. Take good care, sincerely, Vee

 
Old 10-05-2007, 12:19 PM   #8
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Re: How long can you have symptoms of Lupus before tests come back positive

Veej, Thanks a lot for your information it means a lot to me. I will check it out. I was also surprise to know that we can develop vitilingo, just a month ago, I started to developed this rash on my right elbow it started right after we went to disney and I spend a few hours in the sun at the pool with my kids. It started with a burning sensation, then an itch and at the end it developed like a white spot it became quite large. I never thought it was related to Lupus I thought it was vitilingo and not related to Lupus. I don't know if I should mentioned it to my Rheumatologist and have it check it out or just let it go? Well thanks a lot you have been a blessing for me.
Sincerely, Jamusa.

 
Old 10-05-2007, 02:19 PM   #9
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Re: How long can you have symptoms of Lupus before tests come back positive

Hi Jamusa,

I have a lot of different symptoms, but have been diagnosed thus far as connective tissue disease and not lupus.(Ra and lupus are definitly a possibility) My ANA was as high as 1:1280, and since I have started plaquenil and been on prednisone, my last bloodwork also came back with a negative ANA. I too was puzzled, and my Rheumy said that this is not usually the case, that the meds would make it negative, but I have read the contrary on this site. My ANA was highly positive for 6+ years, and only after the plaquenil and pred has been negative. I feel better on the meds, but still have flares with swelling, joint pain and fatique, however not as severe. I am sorry about your baby, and hope this finds you feeling better.
Kelley

 
Old 10-06-2007, 03:08 AM   #10
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Re: How long can you have symptoms of Lupus before tests come back positive

Quote:
Originally Posted by jamusafl View Post
Veej, Thanks a lot for your information it means a lot to me. I will check it out. I was also surprise to know that we can develop vitilingo, just a month ago, I started to developed this rash on my right elbow it started right after we went to disney and I spend a few hours in the sun at the pool with my kids. It started with a burning sensation, then an itch and at the end it developed like a white spot it became quite large. I never thought it was related to Lupus I thought it was vitilingo and not related to Lupus. I don't know if I should mentioned it to my Rheumatologist and have it check it out or just let it go? Well thanks a lot you have been a blessing for me.
Sincerely, Jamusa.
Hi Jamusa, I too had a rash that appeared on my left elbow area and increased over a few days. It was very itchy and sore at the same time. After applying steroid creams it went away. My specialist believes it was related to my lupus. I also suffer from cellulitis on my legs. Tiny red spots under the skin. It is much worse when I have been in the sun. This too is a lupus symptom. I often get rashes on my neck but only on the right side (weird) especially after being exposed to the sun. I am now taking Plaquenil (only started 3 weeks ago) and really hope this helps with the rashes and pains. I suffer terribly from exhaustion. It is great to be able to talk to people who are going through the same things. you think you are all alone sometimes. I also have severe depression and anxiety. Sheree

 
Old 10-06-2007, 04:40 AM   #11
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Re: How long can you have symptoms of Lupus before tests come back positive

Sheree, Just wanted to say, "Hi & welcome!" It IS weird that your neck rash is only on the right side; are you maybe in a car a lot? (I used to get more rash on my driver's side.)

Plaquenil can take as long as 4 months (or so) to reach full effect, I think the reputable literature says. I felt depression lift as pain levels lessened & energy improved, and I truly hope you find likewise. Best wishes, from Vee

 
Old 10-06-2007, 12:45 PM   #12
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Re: How long can you have symptoms of Lupus before tests come back positive

Thanks a lot ladies you are truly angels I feel much better knowing that I am not alone. I just wish a lot of people that have Lupus will know about this site so we can help each other. Thanks a lot, I will be checking in everyday. If anyone have any question for me I will be here. Love you all.

 
Old 10-07-2007, 05:36 AM   #13
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Re: How long can you have symptoms of Lupus before tests come back positive

Jamusafl, In your shoes, I'd let my rheumie's office know about the pigmentation change, so that he/she can decide whether it needs to be seen, or nothing to worry about. He/she can always say NO NEED RIGHT NOW, right? And, hopefully, tell you how to curtail the problem from worsening.

I'm glad you found this group, too! Bye for now & take good care, Vee

 
Old 10-12-2007, 09:54 PM   #14
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Re: How long can you have symptoms of Lupus before tests come back positive

Hello Ladies, thanks for replying. I have been having problems for four years now. I was diagnosed first with Osteoarthritis..and then Fibromyalgia.
A year and a half ago I was diagnosed with Celiac disease. I am progressivly getting worse. I have a rash on my face that resembles a blush. It is really prominent at night. I also have sores that appear on face, neck and chest.
They resemble chicken pox. I assumed it was just pimples, but have since found out from a friend who has lupus that they could actually be lupus sores.
Jamusa I am sorry about your baby. I lost my first baby too. My new Rheumy put me on Cymbalta for the fibro and so far it hasn't even touched the pain.
My blood work AI tests were neg, but my friend with Lupus said so is hers and the way that she found out she had Lupus was when they biopsied the sores she was getting. Weird.
I have pernicious anemia, which could be due to the celiac.
I am a mess...LOL
And the cold weather really messes with me too..
Thank you for responding...
Lucy

 
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