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Borderline Lupus????? need your help

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Old 12-03-2005, 08:27 AM   #1
Join Date: Apr 2005
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summerbreeze7 HB User
Borderline Lupus????? need your help

I was told about one year ago that I had borderline lupus which at the time my main ordeal was getting a difinitive dx. of what my dermapathologist thought was systemic mastocytosis (mast cell disease) which turns out I do have this rare disease. At the time my Doctor didn't seem to concerned about the borderline lupus................should I be concerened now????? I have been getting this hot feeling off and on (not sweating but very hot) like a fever with dizziness. Light sensitivity and cognitive changes. Any help here would be great!!!! Is there such a thing as borderline lupus???? Does that mean it eventually turns into actual Lupus????????

Thanks in advance for any advice/info!!!!!!!!!!!!!
Take Care, Kathy

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Old 01-09-2006, 10:50 PM   #2
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handmade_n HB User
Exclamation Re: Borderline Lupus????? need your help

Personally, I have never heard of "borderline lupus." From my experience, I would guess that your doctor means you have some symptomology of lupus, but not enough to give you a definitive diagnosis. This happens to most people for years before they are definitely told they have lupus. Lupus is often a diagnosis of exclusion, which means they rule out all other possible causes of your symptoms before they settle on lupus.

As you and your doctor develop a history, he/she will be able to see patterns in your symptoms that will give him/her a better idea of whether you have lupus or not. Therefore, it is very important to keep all of your doctors up to date on all of your symptoms or changes in the severity of your symptoms.

Being in that gray "borderline" time is very frustrating. However, those in that time can take heart that their doctors are very careful and conservative in their diagnosis. For one thing, having an official diagnosis of lupus, although it validates your experiences and gives your doctor a better roadmap for treatment, can also cause you difficulties in getting insurance and other things. So, hang in there... if your doctor is worth his/her salt, when your symptoms are serious enough to warrant a different type of treatment, he/she will let you know. As you will read here alot, doctors tend to treat lupus symptoms, not the disease itself.

Hope this helps!
Susan, aka handmade_n
Lupus, Fibro, APS and more!
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Old 01-10-2006, 07:07 AM   #3
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Re: Borderline Lupus????? need your help

Dear Kathy, As "handmade" just wrote [Hi, handmade!], the term "borderline lupus" probably doesn't have a formal & clear definition.

He may have meant symptoms suggestive of lupus are on the rise. Such symptoms may not ever reach the "4 of 11" diagnostic required criteria for SLE, as outlined in the "sticky post" at the front of this board. To be Dx'ed with SLE, you are supposed to meet "4" of thse criteria at some point, not necessarily all at once or at the moment of Dx, so a lifetime health history is important.

And there are related diseases/syndromes, too. *If* you fit certain prescribed, defined criteria, some drs. come up with "lesser" Dx'es that are related to, but less than, full SLE. e.g., UCTD (undifferentiated connective tissue disease), or MCTD (mixed connective tissue disease).

(An aside: Having some sort of "lesser" Dx maybe can get you some treatment, which might be a good thing. But, on the other hand, a Dx will go onto your medical records, including any applicable medical insurance...)

And there are also lesser versions of SLE, called "subsets". Some drs. explain these, some don't, and some don't seem to recognize them at all(!). Subsets of SLE (systemic lupus) include discoid (DLE), considered the mildest; subacute cutaneous (SCLE), considered the intermediate; drug-induced (DILE); and neo-natal (seen in newborns)

I personally had an lengthy & absurd search for help. Someone doing a hospital test finally let the cat out of the bag & told me lupus was suspected (was stunned). My GP then assured me I didn't have it, as did every dermie, etc. I saw. After years of rashes & other symptoms, I took myself to a Manhattan rheumie and learned RIGHT AWAY, after brief one round of new tests & one last skin biopsy done by a Manhattan dermatopathologist, that I had the SCLE "subset".

At least your dermatopathologist has given you a huge "hint" of what he suspects. If you continue to feel poorly, or if no treatment plan is started but you feel you need something, or if any other symptoms rear up, perhaps you could just inquire pointblank about seeing a rheumatologist?

But I suspect a dermatopathologist would *probably* know all about such refinements as MCTD, UCTD, and lupus "subsets". Maybe you could just ask if any other related Dx'es, short of full-blown SLE, are possible?

Just curious... What does mastocytosis look and feel like? Were you ever treated for it with meds or treatments that may possibly induce lupus-like symptoms?

For what any of the above may be worth to you... Skin stuff, let alone autoimmune-related skin stuff, can be frustrating, puzzling, and prolonged, as you clearly know already. Anything here you want rephrased, just give a holler, OK? Meanwhile, best wishes, from Vee (Dx'ed in 2000 with SCLE after 8+ years of circular torso rashes & other problems falling short of major organ problems)

Old 01-16-2006, 08:18 PM   #4
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Andra31 HB User
Re: Borderline Lupus????? need your help

I just found this for you on the Lupas foundation web page I hope this helps to answer you question

My Doctor said my lupus test came back "borderline positive." What does this mean?
The screening test for lupus is called the ANA (antinuclear antibody). All lab tests have normal values. If a test result comes back and the value is at the upper limit of normal, this is often referred to as being on the border or borderline. These results are often very difficult to interpret; and the assessment of its importance is dependent on meeting other criterion. It is likely that a borderline positive ANA assumes more importance if other criteria are also present.

Please check out this web page it will answer many of your questions.



Old 01-17-2006, 02:13 AM   #5
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Re: Borderline Lupus????? need your help

Dear Summerbreeze & Andra31, ANA is so tricky. It can be positive due to a passing virus; due to a family tendency; and also in other rheumatic diseases such as rheumatoid arthritis, scleroderma, etc. Plus, labs use different measuring standards. Finally, its value rises and falls. Its "specificity" in diagnosing systemic lupus thus is considered only "fair".

ANA is NOT a specific antibody: it's a general thing. Only two specific antibodies are considered HIGHLY specific to SLE: anti-ds-DNA and anti-Sm. If either of these are present, its specificity to SLE is "excellent".

Many of the other possible bloodwork findings are considered useful but not highly specific to SLE: e.g., anti-Ro, anti-La, and antiphospholipid are only "fair"; anti-ribosomal P is "good"; rheumatoid factor is "poor"; etc.

This is a longer way of illustrating what Andra31 just said for bloodwork, that some results carry more weight than others, and must be viewed in the context of the other 9 possible (non-bloodwork) diagnostic criteria.

The skin criteria are interesting---and confusing!---also. One criteria is photosensitivity. Problem there is that by the time you get to the doctor's office, your rash may have faded; AND that rashes other than lupus rashes may be caused by sun. The "discoid" and "malar" skin criteria are also subject to misinterpretation, as so many other skin problems can occur in humans that may look something like one of these, to the naked eye.

Personally I was considered "borderline" by my suburban doctors for many years. They kept waiting for my ANA to turn positive, or for my face to erupt into a malar rash, or for some other of the criteria to suddenly erupt. I had annular nonscarring torso/arm rashes that were nicely round but not "discoid", in the sense that they didn't scar; photosensitivity; arthritis; and blood abnormalities (anemia & low WBC). I was positive for anti-Ro, BUT my ANA was always negative.

Well, those doctors were comparing me to the *wrong list*, was the problem. I was instead an absolutely classic picture of the SCLE "subset" of lupus.

Knowing what I know now, if some dr. told me I was "borderline", and it went on for years, and I felt lousy much of the time... well, I'd ask which aspect(s)was/were being considered "borderline", to try to determine if his interpretation was sound. I'd also insist on seeing my bloodwork and really zero'ing in on any aberrant antibodies & what they may mean; ditto with any skin biopsy results. And I'd certainly try another dr. sooner, if no relief was on the horizon.

Best wishes & hopes for clarity for you, Kathy. I never asked the right questions, because I wasn't even told for years that lupus was a possibility. It's good that you were given a clear "heads-up", at least.

from Vee (woke up at 4:00 AM & have no idea why. Grrrrrrrr.)

Old 01-22-2006, 05:54 PM   #6
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handmade_n HB User
Thumbs up Re: Borderline Lupus????? need your help

Hi to you, too, Veej!

You are a wealth of information. Thanks for all you do on this board!

And thanks for explaining what "subsets" are! I was really wondering, lol.
Susan, aka handmade_n
Lupus, Fibro, APS and more!
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