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Old 04-28-2010, 04:33 PM   #1
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Exclamation Sero Negative Lupus/MCTD

Hi everyone
Is there anyone out there that has negative ANA no matter how sickly they feel?

My rheumy dx me with UCTD but most of my symptoms fit under lupus. Have vitiligo, skin rash after sun, joint pain, chest pain (costonchondritis dx), have had pluerisy several times, severe fatigue, IBS, Endometriosis, neuropathy, hyperpigmentation, elevated liver enzymes (had to have biopsy due to them being pretty high most of the time I'm tested), problems with digestion, swollen lymph nodes, weird pain in my ribs and upper abdomen off and on.

Anyway, just wondering if there is anyone else out there like this or with similar symptoms.

I take plaquenil but it does not seem to be working very well. My rheumy also thinks I am getting sjogren's as my eyes are severely dry and had severed blurred vision due to the dryness so I use drops now.

 
Old 04-28-2010, 07:13 PM   #2
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Re: Sero Negative Lupus/MCTD

Littleflower, hi & welcome. After many years, I was dx'ed as ANA-negative but positive anti-Ro, which put me in a very low-odds subset of lupus called Ro-lupus. Over decades, I had multiple bouts of pneumonia & encephalitis, decades of joint pain and pain along long bones in arms & legs, elevated sed rate, low-grade fever, hair loss, leukopenia, migraines, 20+ years of GI problems (severe enough to be hospitalized several times), urinary problems---then finally rashes that were determined to be lupus-specific.

Even though your ANA has not been "caught" positive, have you tested positive for any more specific autoantibody? I think ANA is only a threshold test, so maybe your dr. could run it WITH more specific tests along with it.

Given that some of your symptoms suggest Sjogrens, has your rheumie done tests for Sjogrens? Like Dry Schirmers or lip biopsy?

What do your rashes look like? I'm curious because mine were weird circles on upper arms & back that 6+ local dermies couldn't identify. Has a dermatologist or dermatopathologist done a deep-punch biopsy on your rahes? Also, immunofluorescent stain tests on the punch? (The stain tests were what finally made sense of my rashes---after eight years. )

How long have you taken Plaquenil? I think it can take 4 or more months to reach full effect. Also, UV from sun can be a big trigger for many people, so have you determined whether you just avoid sun?

But please know I'm only a patient, so do take the above for what it's worth! (That means with a BIG grain of salt! ) Also, did you read the sticky posts at the top of the thread list? They contain useful basic info. I do hope you keep posting. HANG TOUGH. Warm wishes to you, Vee

 
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Old 04-30-2010, 04:08 PM   #3
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Re: Sero Negative Lupus/MCTD

Hi
Let's see the rashes, I've taken pics and brought them in to rheumy. On my cheeks and face it looked like hives. My first episode of rashes was hives for about 5 months duration and my dr never sent me to specialist. just said allergic reaction. Then I was severely fatigued and had slightly raised wbc, platelets and lymphadenopathy all over. So I wound up at a hematologist instead of a rheumatologist as cancer was ruled out. I had a biopsy of one site where I got hyperpigmentation and it was confluent and reticulated pappilomatosis (probable variant of acanthosis) only problem is that I don't have out of control blood sugar. I did have a few weird rashes as well that I though were ringworm but did not know how the heck I would have caught that. What does your leukopenia look like? Is that white spots? I'm wondering if I should have the light spots biopsied?

I've had urinary frequency for 10 + years that was determined to be cystitis back then but have just made another appt with urologist as it's out of control.

My dr has not done any lip biopsy but my eyes are so dry that I had blurred vision for 2 days in the one and now have to use drops all the time.

I think I've been tested for every antibody out there but my dr said there are way too many symptoms and perhaps i'm just not there yet or maybe i will stay in the UCTD forever.

Seems like I fit lupus to the tee but no antibody test has been conclusive. What is the anti ro? How long did it take for you to get a dx? I just started going to a rheumatologist about 2 yrs ago and just got dx with UCTD in November .

thanks for everything. I appreciate the help and someone to talk to.

 
Old 05-01-2010, 09:07 AM   #4
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Re: Sero Negative Lupus/MCTD

Littleflower, hi. My lesions (upper arms & back) were ringlike, red rims with clear centers. Like you just wrote, my first thought was also RINGWORM (eek); and several of my dermies had that thought initially, too. After many tries, this rash was diagnosed as subacute cutaneous lupus erythematosus, abbreviated SCLE.

White spots sound more like depigmentation to me, but only a real dr. could say for sure.

Anti-Ro (also known as SS-A) is an autoantibody that attacks cell cytoplasm. Anti-Ro is heavily associated with Sjogren's syndrome. It's also seen in lupus in the small, low-odds group known as Ro-lupus (negative ANA but positive for anti-Ro).

The cystitis drove me NUTS. Good luck with your appt.

I saw drs. over decades. Looking back, I don't know when my first real "hit" was, or whether I had things that are seen in people who LATER develop lupus. First widespread pain episode was at age 13; I was hospitalized & tested for all sorts of things. They found fever, elevated sed rate & leukopenia; then discharged me with a script for Tyelonol + codeine, which I took for a full year (hated it!). I was diagnosed 35 years later (no kidding). I didn't have skin rashes until my late 30's---too bad, maybe, as they can help nail down a Dx.

I didn't do well with suburban drs. I saw at least 6 dermatologists---and not a one recognized my rash as possible autoimmune-mediated. Then I went to a metro rheumatologist who's affiliated with a teaching hospital. he took ONE LOOK & knew what I should be tested for. Same immediate response from the dermatopathologist the rheumie referred me to.

UCTD is a "real" condition, from the books on lupus I borrowed from the library. Has your rheumie prescribed meds? Bye for now, Vee

P.S. Leukopenia is low white blood cell count. Lupus is one of multiple conditions that can cause it & I think some meds can cause it as well.

Last edited by VeeJ; 05-02-2010 at 04:06 AM. Reason: added P.S.

 
Old 05-02-2010, 10:38 AM   #5
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Re: Sero Negative Lupus/MCTD

Hi Vee
Wow, you poor thing that it took sooo long to dx!

I do remember that this all was precipitated by the ringworm like rash, then hives, then hyperpigmentation (which upon research there is a variant of Acanthosis that is caused by autoimmunity called acanthosis Nigricans syndrome b I believe). Then I got vitiligo and the only dermatologist that thought wow hyper and hypo pigmentation is very odd (had to go to grand rounds as they did not see many cases like it) and they though of polyglandular autoimmune syndrome by my endocrinologist ruled that out. However, none of my "rashes" were ever biopsied. Just the hyperpigmentation and the vitiligo was under a woods lamp.

I had my first "episode" when I developed mono and my arm (one whole arm practically) looked greyish blue and they finally said it was raynaud's phenomenon. After about a year or so of rest I began to feel better but they never understood why it took me so long to recuperate from mono as normal was 4-6 weeks.

I went to 4-5 rheumatologists until finally I went to Jefferson University Hospital in Philadelphia and found a wonderful dr there who took all my symptoms into account and dx me with uctd.

I'm not certain if she's done blood work for the sjogren's but every time she tests me it seems everything is fine lab wise. But I do have countless labs from other drs (and in between her labs ironically) that show platelets low and high and I always have elevated liver enzymes.

I just had to have a liver bx to find out what is going on as the GI dr's have ignored the labs for over a year and my persistence alone is what got me the bx. My rheumy says I have to get the liver issues resolved before she can try any new meds. The plaquenil is not doing too much for me.

What meds do you take and are they helpful? How are you feeling now? I hope you're doing ok.

Thanks Vee

 
Old 05-10-2010, 03:52 PM   #6
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Re: Sero Negative Lupus/MCTD

I have been having some strange symptoms over the past 8 months and I just had the ANA test and it was negative. I have a few of the same symptoms you have- rib/upper abdomen pain (mainly on my left side), enlarged lymph nodes (in the left axilla region). I was diagnosed with costochondritis also.

Are your enlarged lymph nodes sore and where are they? Mine are very sore. I have had tons of blood work done and mainly everything has come back normal except borderline anemic and borderline hypothyroid. I have also had XRAY's, CT Scan, and many ultrasounds. The only thing that showed up was the 2 enlarged left axilla lymph nodes.

I think my next step is going to be a biopsy of one of the lymph nodes.

Last edited by ~Clar~; 05-10-2010 at 03:53 PM.

 
Old 05-11-2010, 04:36 AM   #7
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Re: Sero Negative Lupus/MCTD

Littleflower, I take Plaquenil. Also, sun-avoidance is a must for me. I've been MUCH more stable. My flares are now mainly pain & fatigue, nothing worse. How are you making out? Any new insight into your elevated liver enzymes? Good luck, Vee

 
Old 02-05-2011, 06:02 PM   #8
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Re: Sero Negative Lupus/MCTD

i was dx with fibromyalgia 2 years ago, then that rheumy emmigrated and i saw another rheumy who thought i had lupus, i had a positive ana,lots of pain in my arms,fatigue.then my ana was repeated several more time and has always come back negative since then, my rheumy then dx me with UCTD, i have not seen him for over a year as thats how long it takes to get an appoinment in this useless health system,my GP has even spoke to his secretary to try to get me in sooner but was unsuccessful.
i have had so many symptoms since i last saw the rhuemy, really bad pains in my feet i can hardly walk most days, and hands for months,rashes on my arms and legs, swelling in my hands and feet,daily headaches,memory problems,joint pains,lower back pain,also been under the uroligist for 12 months as i have been urinating 3 - 4 times during the night,ive had many tests and still under investigation, i have sores always in my mouth, unexplained bruising all over my legs, and purple spots on my knees.
i also have the red rash accross my cheeks. do you think the uctd could of turned into lupus but without the positive ana? ive been in such a bad flare for weeks now that ive had to stay off work,my pred was put upto 30mg a day but this wasnt helping so tapered back down, im taking 600mg of tramadol a day just to take the edge of the pain,anyone any suggestions? ive tried all the usual, plaquenil,hydroxychloriqine and the pred was workin but now its not.

 
Old 02-06-2011, 05:05 AM   #9
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Re: Sero Negative Lupus/MCTD

Chowworld, hi. My understanding is that it's rare but possible to have ANA-negative SLE. Some experts call it "Ro-lupus", view it as a distinct "subset" of SLE, and estimate its incidence as 3% to 5% of all cases. These patients typically test positive for anti-Ro, an autoantibody that's seen in lupus and in Sjogren's syndrome.

But obviously, drs. find anti-Ro ONLY if they run tests for specific auto-antibodies DESPITE a patient's ANA remaining negative! The problem is that drs. typically order tests for ANA subtypes ONLY IF the ANA is positive, so patients with negative ANA therefore can remain in limbo.

Ro-lupus patients may meet fewer than 4 or more than 4 of the ACR criteria for SLE. They're thought to have lower odds for kidney & CNS involvement, but this is controversial... They're typically extremely photosensitive. They're "eligible" for malar and discoid rashes, but there are two OTHER lupus rashes they tend to get even more often: one is SCLE annular form, which in mature form looks like targetlike circles; and the second is SCLE psoriasiform, which looks something like psoriasis (but isn't). Neither of the SCLE rashes tends to scar/depigment... at least not to the extent "discoid" rashes do. Sun avoidance is usually totally REQUIRED for this subset.

Interesting, someone here mentioned just within the last few days that cystitis is particularly common in anti-Ro patients. (Hmmmm.....?)

What do your arm/leg rashes look & feel like? Do you see any correlation with UV exposure, from sun or tanning salons? Have you seen a dermatologist? I ask because another approach to a lupus diagnosis is to have your chronic rashes proven to be lupus-specific. A dermatologist or dermatopathologist does a deep-punch biopsy & also performs immunofluorescent stain tests. If a rash is a lupus rash, during the stain tests, the expert sees peculiar lines that are seen ONLY in lupus.

I was diagnosed with this "subset" of SLE, and I think there are several others here with it. I had most of what you described, plus some other stuff. Plaquenil, OTC ibuprofen, and strict sun avoidance have helped me a lot. At one point, my urologist considered interstitial cystitis, because my urinary problems got so bad towards the end. (I never did have that IC knock-out test, because a new rheumatologist took over & produced answers in just a month.) I hope you post again soon. Sending warm wishes, Vee

 
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Old 02-06-2011, 06:43 AM   #10
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Re: Sero Negative Lupus/MCTD

thanks for your reply, im not sure if ive been tested for anti ro ,my rheumy didnt actually do any tests at all it was all done by my GP,i am under cardiologist for chest pains ,and the urologist dilated my uretha to see if that would help with the bladder issues but it didnt so im waiting on a flow test and another bladder scan,the most bothersome thing right now are my feet and hands the pain is awful and im taking 600mg of tramadol and that only takes the edge off it, i have to wait untill april to see my rheumy again so im at the docs every week because im in so much pain,i just dont know what to do next,its all so frustrating.

 
Old 02-06-2011, 07:07 AM   #11
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Re: Sero Negative Lupus/MCTD

Chowworld, you could ask ALL the drs. you see about your skin rashes & the possible tests on those, since those tests could prove lupus---not "guaranteed", of course, but POSSIBLY. Can't hurt to ask, right? Especially since you're feeling somewhat stuck on the urological & rheumatological fronts!

I feel for you. And I hope others chip in soon, because so many of us here hit roadblocks & frustration---and maybe can throw more ideas out, that you could turn into questions. Sending my best, Vee

 
Old 02-07-2011, 10:07 AM   #12
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Re: Sero Negative Lupus/MCTD

i asked my doc today about the RO tests and they hadnt been done so these have now been ordered ,he has also told me today that a have a vitamin d defficiency which i have researched and there does seem to be some evidence that this is related to lupus, hopefully il get some definate answers soon il be having the blood tests done this week.thanks for your input vee much appreciated.

 
Old 02-21-2011, 11:07 AM   #13
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Re: Sero Negative Lupus/MCTD

I went to 4-5 rheumatologists until finally I went to Jefferson University Hospital in Philadelphia and found a wonderful dr there who took all my symptoms into account and dx me with uctd.

I am seeing a Rheumy at Jefferson too. I started seeing him in October, again in November, again a few weeks ago and I'll see him again next month. He's very thorough and all which is great but he is having a problem trying to put my puzzle pieces together. When I saw him initially he said I had a lot of pieces of a lot of things but after all the blood work was done he said he doesn't have too much to go on and now he's not sure he will be able to treat me. I have a SED rate of 74 and a high CRP...I tested positive on my ANA but my titer was negative at 1:40 speckled. Low Vit D but I swear every one I know has low Vit D these days. I was DX with Fibro locally (near Atlantic city) but the SED rate and CRP indicate inflammatin and they aren't symptoms of Fibro. Not denying I have Fibro...just think there's something else at play here. My last Rhemy visit he decided again to do more blood work and gave me a script to start Prednisone the day of the blood work. Within 3 days I actually began to feel better. The swelling is coming out of my legs...peeing a lot too...and I'm beginning to feel alive again. I'm walking rather than feeling dragged. I wake up ambitious and ready to start my day rather than laying there bribing myself to get out of bed. Next week or so I need to get the blood work done again and he wants to see how Pred has effect the values. If there is improvement...does it seem like he could possible be on track for figuring out the puzzle?? He reminded me he's nowhere near a DX for me but said something about Mixed Tissue Disease...would good results with Pred possible indicate that condition? Maybe since he's not finding much in my blood work he's starting a possible treatment to see if it effects the condition rather than the other way around?? I have no idea...anyone have any thought with this?
Thanks,
Sharon

 
Old 02-21-2011, 01:47 PM   #14
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Re: Sero Negative Lupus/MCTD

Fibrobugsme, hi. I think one term for short-term steroids, to see the reaction, is a "steroid challenge". I believe it's tried when various connective tissue diseases are possibilities, e.g., lupus, RA, MCTD, UCTD (Undifferentiated Connective Tissue Disease), etc. I think others here have done this---and someone very recently.

Has your rheumatologist run specific autoantibody tests, even though ANA has looked negative so far? ANA-negative lupus is rare, but possible; and I think ANA can be negative in RA. I'm not sure about MCTD, UCTD, and the others... You could ask your dr. about all this. Sending best wishes, Vee

 
Old 02-21-2011, 04:28 PM   #15
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Re: Sero Negative Lupus/MCTD

Quote:
Originally Posted by VeeJ View Post
Fibrobugsme, hi. I think one term for short-term steroids, to see the reaction, is a "steroid challenge". I believe it's tried when various connective tissue diseases are possibilities, e.g., lupus, RA, MCTD, UCTD (Undifferentiated Connective Tissue Disease), etc. I think others here have done this---and someone very recently.

Has your rheumatologist run specific autoantibody tests, even though ANA has looked negative so far? ANA-negative lupus is rare, but possible; and I think ANA can be negative in RA. I'm not sure about MCTD, UCTD, and the others... You could ask your dr. about all this. Sending best wishes, Vee
Oh yes, my Rheumy has run all sorts of blood work!! When they did the first batch they took 12 vials from me. My compliments are normal... My RA is negative too. At one point he mentioned seronegative arthritis but this time he was thinking connective tissue disease. I swear...I don't care what he decides to call it as long as he can find a way to treat it. I'm doing really well with Prednisone right now and he had asked me on one of the meetings if I had taken Plaquinal and I said no. Maybe he can try that out for size if it appears I'm doing well with Pred. He said there are only 3 areas of medicine where a high SED rate would be found. If I don't have cancer, and my heart is fine then the problem would be rheumatological. Like I said I don't care what he calls it...I just want to feel better.

Take good care ok?
sharon

 
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