Hello all, I have had health problems for 7yrs now. My Rheumy feels sure I do have sle (definitely 3 and a couple possible criteria
) but says she does not want to positively diagnose it because she says it will mess with all kinds of insurances. Sounded fishy to me however shortly after she said that we purchased a house. One of the questions on the loans insurance policy was are you or have you ever been diagnosed with an autoimmune disease such as lupus. I could honestly answer no. Then a couple of years ago I had a biopsy of a rather strange looking area on my temple it tested positive as a lupus lesion. I am also positively diagnosed by the same rheumy with APS + Lupus anticoagulant and fibromyalgia. So my question is does the lupus lesion mean I do have lupus or would it still be iffy? Is the Rheumy just yankin my chain? TIA
Last edited by angelomercy; 08-30-2009 at 11:51 PM.
aneglomercy, hi. I *think* if you have a lupus-specific rash, you have lupus to some extent. But lupus ranges widely, from mild to severe. "Systemic" lupus (SLE) is the broadest, most dangerous kind; iy's defined by your meeting 4 or more ACR criteria (can happen over time, meaning not necessarily all at once). These criteria are laid out in the "sticky post" (permanent info post) at the top of the thread list.
Lesser variants are sometimes called "subsets". Here are 2 common ones:
Discoid lupus (DLE) is considered the mildest form of lupus. In this subset, you meet fewer than 4 criteria. You could have things in addition to discoid rashes, like pain &/or fatigue. A small percent who start out with "just" discoid lupus progress to SLE, but most don't.
Subacute cutaneous LE (SCLE) is viewed as an intermediate subset, falling somewhere between DLE and SLE. Although it's "systemic", the worst problems seen in SLE (CNS & kidney) are thought to occur less often in SCLE than in SLE. However, individual patients can experience the full gamut of problems seen in SLE.
Re: APS, I *think* it's considered autoimmune, whether it appears in conjunction with lupus or is "standalone". The mechanism is certainly akin to lupus in one sense: your body's immune system is mistakenly attacking your own cellular matter. In APS, that would be a blood component, I think.
As to whether your rheumie is yanking your chain... maybe not! I tried getting long-term care insurance after being Dx'ed. Wow! I had to talk myself blue & send vast amounts of info. I'm in the typically intermediate SCLE subset---and they still didn't want me.
THAT SAID, I think of far greater importance is whether you're receiving the treatment warranted by your symptoms! Are you on any lupus meds? Does your APS require treatment, like daily aspirin, or even Coumadin? (Some poeple with APS require no meds but do have to be monitored for changes.) Were you warned that sun can trigger rashes & flat-out flares in some people with lupus---& thus you may need to take BIG sun precautions?
Please take all the above for what it's worth, meaning I'm just a DUMB PATIENT! Anyway, I hope you post more soon. Sending my best wishes to you, good-night, Vee
Thank you VeeJ for your response. Please don't ever call you self "just a DUMB PATIENT". I am a nurse and was taught VERY little about lupus. I am on lyrica for the fibro and daily adult strength ASA for the APS as well as lovenex injections when having any type of medical procedures or surgery. When I "flare up" I have been given courses of steroids to reduce inflammation. My sed rate is always elevated. I am given miracle mouthwash for the oral sores which does nothing but numb my mouth. That is pretty much the only tx per se that I have received. Yes I have been advised to avoid the sun resulting in a vit d deficiency and the need for supplements. I do get ill when it is necessary for me to be in the sun. I am on other meds but mostly for pain and a sleep disorder. Again thank you for your response. Do you have any info or advice on avoiding or treating the oral and nasal sores I have most all the time? Thanks angel
angel, your local library should have at least one of the mainstream hardcovers written for patients. Dr Daniel Wallace is a top choice, and another is Dr. Robert Lahita.
I'd love to know how you react to what Dr. Wallace says about Plaquenil, how it helps *ongoing* with inflamamtion, lesions, mouth ulcers, hair loss, etc. Plaquenil is used for milder RA & non-organ threatening lupus, BTW.
This rheumie not wanting to "mess with insurances"... honestly, that hits me poorly! Has she run ALL the usual autoimmune tests, starting with ANA (but it's only a threshhold test & is positive in multiple conditions)? And the various *more specialized* tests run when lupus is a candidate, like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, etc.? FYI, Dr. Wallace charts at least 16 such tests & also conveys how they vary in "specificity" to lupus.
My local drs. failed to Dx, too. In my case, I think it was mainly that they didn't recognize the subset I have = SCLE or ANA-negative SLE (pick one, I could fit either). If you were to skim Dr. Wallace's book, I think you'd see mention of every symptom & finding you've cited so far. (Hmmmmm....???)
The big-city rheumie I saw was the first dr. to scrutinize my LIFETIME medical history. Have you seen the "sticky post" about alternative criteria, listing things that are common in the early years in people who later go on to develop lupus? Do these ring any bells with you?
Oh---for oral ulcers, Dr. Wallace lists what he calls "old-fashioned remedies": buttermilk gargles; hydrogen peroxide diluted in a few oz. of water; and dental gels like Kenalog or Orabase. I hope something above helps & hope you can gain ground on your problems. Stay in touch, OK? All my best, Vee
P.S. I was B-12/Folate anemic for years, probably due to chronic inflammation. Can inflammation lower your Vitamin D level, in wonder?
I don't have any info on the different levels of Lupus, but I did want to mention an antiseptic rinse called ST 37 that my mother used for many years for mouth ulcers. She swore by it and even gave it to her children for sore throats. I do remember that it seemed to help with strep or tonsillitis. I did a search for it as I am having some dental work done and felt I may need later as I have to adjust to a partial, and it is still available. Also I eat yogurt everyday as I tend to have yeast type symptoms when I am on antibiotics. I know that is frequently a problem with steroid use as well.