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juanerd
06-29-2007, 04:15 PM
Hi my name is John am 47 years old, live in Millbrae, California and recently my Discoid Lupus turned SLE. I was always under the impression that SLE was a womens disease and as such my denial factor took over. For the past three months I have had to take methotrexate and plaquenil and the exhaustion alone is disabling. I have been given Provigil for the fatigue but I overused this in my desire to keep pace at work. In addition to the Provigil I was given antinausea and anticramping meds which left me further fatigued.

What I have done in the past few days is to quit taking the Provigil, and have cut down on the antinausea/anticramp meds (to counter the methotrexate). In addition I have been given a 30 day paid leave absence from work (God Love 'EM). Although my blood tests show improvement, I am most frustrated to know what happens the minute I quit taking the plaquenil and the methotrexate.

Has anyone out there been going through similar symptoms? I am at a loss as to what to do as one doctor says that my SLE attacks the skin (major organ) and the other says it attacks my red blood cells? I mean what the eff already (forgive my Swahili). GBU All

TERIOD
06-29-2007, 04:49 PM
Hey John, how goes it, as far as fatigue goes welcome to the club, im glad you have a very understanding employer, i couldnt even think about working right now, cant make it over two hours a day, but thats the nature of the beast

Your not the only guy who has it in here, im 44 in sacramento and there are several others, some are real sick right now and others pop in now and again

as far as medications go, im on different ones than you are, and you'll notice lupus affects most everyone differently, right now im having way to much fun with my kidneys etc etc etc, which leads me right into doctors, are you seeing a rhuemy???? i think your first dr is the closest to being right about sle---skin-organ invovlement, althought lupus does effect red blood cells, it is not limited to that alone(close minded drs have close minded thoughts)

when i said welcome to the club, i wasnt tryin to be smart, I mean welcome

there is a mens section in here where we get together and bs and the girls sneak in and check things out sometime but thats ok

juanerd
06-29-2007, 05:30 PM
Hi Teriod, Thanks tons for the reply. I have been operating pretty much solo and its great to know guys out there like yourself going through the same thing. I am sorry to hear about your kidneys and slowed days. That is really a bummer. I am trying to tack on some pounds and am currently 145 instead of the usual 165 area. I have been known to have a very positive attitude and that helps me a great deal.

I am most interested in joining a mens forum and don't mind women joining in, anything to help you know. This 30 day leave from work has really forced me to "embrace" this situation so I am being as proactive. Coincidentally I do have a very close friend up in Sac and will make it up there soon during this leave to see him (so I say) if I have the strength. Anyway what other symptoms do you have? When were you diagnosed? What do you think may have caused your condition? Genetic? I am beginning to think that mine was contracted through skipped geneticism (if you know what I mean). Although I never met her, my paternal grandmother died mysteriously way back in the twenties and as mentioned they couldn't put a finger on it. Anyway, take it easy, I'll always be here and we'll eventually kick this thing in the rear end!!

Saysusie
06-30-2007, 07:06 AM
Hi Juanerd;
I see that Teroid is taking good care of you and providing you with answers and information. I just wanted to take a moment to welcome you to our family and to let you know that we are here for you to answer any questions, provide information, give you support and to let you know that you are not alone. As Teroid mentioned, there is a Men's Forum here where you guys can share with one another (and I admit, I am one of the girls who pop in once in a while :lol: )
I just wanted to mention one or two things to you. Do be very, very careful about trying to stop your methotrexate. This drug CANNOT be simply stopped. You must wean off of it slowly. If you just stop, you can cause serious damage to those organs that the drug is trying to protect. Discuss tapering and/or dosage changes with your doctor thoroughly before doing anything. Also, as Teroid mentioned, it would be very beneficial for you to have a rheumatologist as your primary physican.
SLE is a very different disease for each of us and it can be anywhere from mild to life threatening. Some with SLE have no internal organ involvement and then there are some who suffer greatly with multiple internal organ involvement. There is no way of predicting what any of our SLE symptoms will be or which symptoms we may or may not develop. It is frustrating, I know.
There have been many studies done on the possibility that Lupus is genetic. It has been recently believed that Lupus is the type of disease that involves genetics and inheritence. This typ of inheritance where a disease runs in a family, but has no direct inheritance pattern, is called polygenic. This reflects the belief that the genetic susceptibility of the disease is due to multiple genes, and that a certain threshold of genetic susceptibility must be reached before an external process is capable of triggering the disease. Many of the best known examples of polygenic inheritance occurs in the rheumatic diseases (such as Lupus, Rheumatoid Arthritis etc.). The precise genes involved in the genetic susceptibility of Lupus varies from population to population, therefore, it is not surprising that the incidence of SLE varies in different populations. Also, different combinations of genes play a role in the genetic susceptibility in different populations. In the United States, the total prevalence of SLE is between 24 and 100 per 100,000 people. For Caucasian women between the ages of 15 and 64, the prevalence is one per 700 women. For African-American women between the ages of 15 and 64, the prevalence is one per 245 women; the prevalence among men, in both cases, is approximately 10-fold lower. This prevalence rate for African-American women makes SLE one of the most common chronic diseases of this population. Interestingly, SLE is felt to be rare in Africa. This suggests two possibilities: that there are environmental risk factors which are more common in the United States and Europe, compared to Africa; or that the mingling of ancestral African genes with Caucasian genes has resulted in an increased genetic susceptibility to lupus.
In a very general way (bear in mind, these are very general statistics), African-Americans with SLE and Asians with SLE have a much more aggressive disease. There is a broad range of severity of SLE in every ethnic group, but African-Americans and Asians have significantly more active disease as a population. Hispanics with SLE are more likely to have kidney involvement or cardiac involvement than Caucasians or African-Americans; while Caucasians are more likely, as a population, to have skin involvement and platelet destruction.

Here is a short article I found about studying the genetic invovlement in Lupus:
"There are several ongoing studies trying to directly identify the genes involved in SLE. Generally in these types of studies, families with more than one affected member are used. Many small pieces of DNA are taken from each of the chromosomes from each family member. These pieces then are amplified (increased in number) and characterized using a method called PCR (polymerase chain reaction). Statistical analyses are then used to compare the pieces of DNA from the affected family members and the unaffected family members. The idea is that if a particular gene is involved, the affected family members should share that segment of the chromosome containing the relevant gene.
When many families are evaluated, specific regions of the chromosome can be identified as being involved on a population basis. Doing this type of study is extremely labor-intensive but has been very revealing. More than 100 genes now are thought to be involved in the genetic susceptibility of SLE. It also is quite clear that the specific genes are indeed different in different ethnic groups.
Some of the chromosomal regions identified in these analyses have been implicated in other autoimmune diseases such as psoriasis (a skin disease) and Crohn's disease (a gastrointestinal disorder). This suggests that some genes predispose to autoimmunity in a general way."

I guess that all of this basically says that genes, amongst many other factors, can predispose us to being susceptible to Lupus. I suppose that when there is a definitive answer to what all of those factor are, then we might be closer to a cure. Let's hope and pray that it does happen!

I wish you the very best and again...welcome to our family! I am not always this verbose..so forgive me :lol:

Peace and Blessings
Saysusie

TERIOD
06-30-2007, 07:39 AM
Hey john, just to let you know, there are two virtual world encyclopedias on this forum about lupus, one of which has just left you a message, sayasuzie and marycain are probally the most knowlegable people about lupus that i have ever met including the drs, and there are many more that have a lot to offer also, so dont be afraid to ask!!!

Saysuzie have you heard from marycain???


Terry

juanerd
06-30-2007, 09:54 AM
Hi Saysousie and Teriod,

I can't thank you both enough for giving me more information in two days than I seemingly have received from my doctors (in laymen's terms) in the past 6 months. Saysousie, that information about methotrexate is absolutely lifealteringly, invaluable. As mentioned I quit for a week to prevent my wifes postponement of a trip to Japan and Hong Kong-had she seen me ill she would have postponed. As a consequence my sed rate skyrocketed and anemia got worse. I am beginning to wonder if 30 days away from my desk will be enough.

As far as environmental factors are concerned, mine has been as such for the past 15 years: have spent an average of three months travelling on business to Asia, mainly Indonesia which I covered from corner to corner. I am in the business of selling our own brand (TOP-1) a synthetic motorcycle oil, "Made in USA", and although fun and rewarding, in retrospect the long hours, hot sun on my fair Irish skin, loneliness and grotty food took its toll. I swear I outdid every politician because thats what the biz was about-"kisssing hands and shaking babies" in order to grow the customer base. It hits hard at times to feel that I won't be able to travel to a hot clime area ever again. Also, I am a drummer-throughout my 20's I played professionally with a known SFO underground act called "Snakefinger". To this day I play, mainly covers and as a biz rather than an art form-I compensate for the lack of the latter by composing and still do dream, not of strdom but of writing for absolute contentment.
We were never druggies. By that I mean, we smoked weed and drank beer and in general were the storm hippies of the 80's.

In any case I spoke with my rheumatologist yesterday who advised that a spike in my methotrexs will be unnecessary (thank God!).

The "denial factor" weighs very heavy also-I just cannot believe I have this condition and I am forced to take the 'trex's'. My current mind set is "great! 30 days off, I'll better my writing skills, become a better drummer and a better man for my wife and kids". Then bam~! Fatigue sets in and I am reminded. There's so much on my mind right now and the remmission phase or lack thereof drives me insane.

What recently found hope I have lies herein this site. So now I know, don't mess with the trex's (a Godsend of a suggestion). The other biggie I have is "protein". Do I want to stay away from taking the protein drinx at 70 mg. per day? Kicking back on the couch with the tevee is unheard of but in general do I just kick back? The most embarrassing ? I have concerns smoking....what effect does this have on my condition? I have been cavalier here about this because it is such a bear to quit, so to the encyclopedics in all of you, what does this nasty habit have that exacerbates this condition? Should I retest for the ANA to see if my SLE is still there? What does a sverely stressful situation do to a system? All last week work was insanely stressful and it is so nice to be away.

As you can tell these are all very brilliant questions, I can't believe I asked for answers to such moronistic questions?

GBU all,
J

IloveHistory
06-30-2007, 11:37 AM
Hi Juanerd!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well! :)

juanerd
06-30-2007, 02:22 PM
Thanks History. It's good to know that you also love history! I like history so much I swear I have lived past lives. Kind of kidding there. I just posted and forgot to thank you personally for welcoming me.

I will continue to post updates and to also check up on anyone.

BTW, what meds do they have you on? If you don't mind me asking how long have you had this condition? I am just now learning to accept, and embrace with all gratitude this condition. It's the only way I'll overcome any self-pity mode. Fatigue can be pretty debilitating can't it, if not downright disabling.

I hope you stay well.

Hope to hear from you or anyone about my other post concerning the meds.

Take care,
J

IloveHistory
07-01-2007, 10:53 AM
Hi!

I feel the same way about History! :wink: :lol:

Well, I have been diagnosed with Sjogren's Syndrome, Fibromyalgia and Cutaneous Lupus Erythematosus (skin Lupus) so far, among many other things (Epilepsy, Asthma, Hypoglycaemia, etc., etc.). However, my doctors know that I have some type of systemic auto-immune disease, but which one, they're simply not sure. My A.N.A. is negative, so the Rheumatologist doesn't think that it's S.L.E.

I am going to see the Neurologist on Wednesday (I have lots of neurological problems), so I'll let you know what meds she gives me then.

At the moment, I'm on Ventolin, Inflammide Novolizer and nebulised Combivent for Asthma. I'm on Zyrtec for Allergic Rhinitis and a few allergic skin problems; I am also on Nasonex Nasal Spray twice daily for Allergic Rhinitis and because I have nasal and sinus polyps. I'm on Yasmin for an endocrine problem and for Endometriosis. I'm on Fluoxetine (20mg) and Seroquel (25mg) for Obsessive-Compulsive Disorder (I have Asperger's Syndrome as well). I'm on Differin Gel and AcneClear for Acne and Keratosis Pilaris. Lastly, I take Agiolax and occasionally, Zelnorm, for Irritable Bowel Syndrome. I use a special sunscreen for my Cutaneous Lupus, which was prescribed by my Dermatologist. I have just recently stopped taking Epilim (Sodium Valproate; other brand names - Depakene/Depakote/Convulex) for Epilepsy because it was making my hair fall out. I will let you know what the Neurologist gives me on Wednesday though.

Keep well! :)

Saysusie
07-01-2007, 03:28 PM
Hi Juanerd :lol:
Let me attempt to answer your questions in the order that they were asked.
First - about protein drinks and Lupus:
Unfortunately, most trainers and bodybuilders are influenced by what they read in exercise and bodybuilding magazines. In my humble opinion, this is worse than getting nutritional information from comic books. Proteins are made up of amino acids, and help build muscles, blood, skin, hair, nails, and internal organs. There are twenty amino acids required for growth by the human body, and all but eight can be produced in an adult body. The reason we are advised to have a low-protein diet is because various amino acids seem to cause problems if in high concentrations, especially tryptophane and possibly phenylalanine and tyrosine. Many of us suffer from vitamin B6 deficiency and this may also have something to do with why these amino acids cause us problems. You should probably read the label of your protein drink to see exactly what amino acids it contains before you continue to use it. Also, we are advised against proteins found in red meats.

Second - Here is what the Lupus Foundation of America says about Lupus and Smoking:
"Any small benefit gleaned from cigarette smoking is far outweighed by tobacco's negative effects. The following list pairs what we know about lupus with the known effects of smoking.
People with lupus are more susceptible to infections, with respiratory infections among the most common.
Smoking cigarettes increases the risk of pneumococcal pneumonia and chronic bronchitis. Researchers report that passive smoking, or regular exposure to secondhand smoke, also raises the risk of having this type of pneumonia. New England Journal of Medicine 2000 Mar 9; 342(10):681-9
Smoking or hanging around others who do may increase your risk of pneumococcal pneumonia.

People with lupus on long-term moderate (11-40mg/day) to high (41-100mg/day) doses of prednisone have been found to develop heart disease (atherosclerosis) 20 to 30 years earlier than the general population. It's not uncommon for angina (heart muscle pain ) and even heart attacks to occur in lupus patients as young as 30 or 40 years of age.
Smoking increases the risk of coronary artery disease.
If you smoke and have lupus you greatly increase the risk of damaging your heart.

Lupus can affect the blood vessels and circulation in a variety of ways. Raynaud's disease is common in people with lupus and when active, results in poor circulation to the hands and feet. Lupus vasculitis can cause narrowing of blood vessels and reduced blood flow to tissues and organs. Antiphospholipid antibodies may increase the risk of serious blood clots and stroke.
Smoking narrows blood vessels and worsens peripheral vascular disease (poor blood supply).
Smoking contributes to blood vessel spasms and can magnify the effect of Raynaud's making a mild case worse, and could result in severe damage to fingers and toes.
Smoking increases the risk of stroke.

Kidney disease in lupus can result in hypertension.
A study at Stanford University of patients with lupus nephritis found that those who smoked progressed to end stage kidney disease far more quickly than did non-smokers (145 months vs. 273 months). Archives of Internal Medicine 1992 Oct; 152(10): 2082-8
Smoking contributes to elevated blood pressure which increases the risk of stroke and worsening kidney disease.

People with lupus can also develop diabetes and thereby be prone to poor wound healing.
Smoking slows wound healing.
Smoking increases the risk of heart attack in diabetics (insulin or non-insulin dependent).

Avascular necrosis of bone can develop in lupus and may require surgery.
Smoking slows recovery from illness and surgery.
Smoking slows bone healing.

Heartburn is found in 10 to fifty percent of people with lupus.
Smoking has harmful effects on all parts of the digestive system, contributing to such common disorders as heartburn. National Institute of Diabetes and Digestive and Kidney Disease - Smoking and Your Digestive System.

Many of the medications used to alleviate symptoms of lupus are broken down by the liver. Lupus can affect the liver.
Smoking affects the liver, too, by changing the way it metabolizes drugs and alcohol. In some cases, this may influence the dose of medication necessary to treat an illness.

Lupus can cause skin disease, which may be effectively treated with antimalarial medications.
Smoking has been shown to interfere with the benefits of hydroxychloroquine (Plaquenil), chloroquine (Aralen), and quinacrine (Atabrine) for the skin disease of patients with SLE. Journal of Rheumatology 1998; 25:1716-1719
A study at the University of Minnesota of patients with discoid lupus erythematosus (DLE) found that smoking was more prevalent in people with DLE compared to those with other skin diseases and those in the general population. The researchers proposed that smoking may be a risk factor for development of DLE. Cutis 1999 Apr; 63(4):231-4)
Studies conducted at Johns Hopkins University School of Medicine have found lupus skin disease is more active in smokers than non-smokers. The Lupus Book 2000; 187

Lupus can cause hair loss and other skin symptoms.
Smoking has been associated with skin diseases and studies in mice indicate a link may exist between smoking and both hair loss and premature gray hair. Toxicology Letters 2000 Apr 3;114(1-3):117-123

Medications used in the treatment of lupus: prednisone, excessive thyroid hormones, anticonvulsants, antacids containing aluminum, and heparin increase the risk for fragile bones or osteoporosis.
Smoking magnifies the risk for osteoporosis.
In addition, over the years research has consistently shown that cigarette smoking causes skin wrinkling that could make smokers appear prematurely old."

Lupus and Stress:
Stress has been associated with the onset of lupus and with Lupus Flares. How stress can initiate (precipitate) lupus is unclear. It may be that certain genetically and hormonally susceptible persons, who have been exposed to just the right amount of environmental factors, are "ripe" for stresses to trigger the onset of the illness or worsening of symptms.
At a cellular level, stress directly affects immune, nervous, and endocrine cells, causing the production of autoantibodies, immune complexes, and pro-inflammatory cytokines. Since all of these are affected by the disease itself, stress only serves to worsen the effects on these systems.
Many doctors have noted that patients have come to them with lupus for the first time after significant life stresses. Stress not only can cause fatigue and a general lack of well-being in healthy people, but these symptoms are exacerbated in Lupus patients. Stress can also cause a flare up (reactivation) of the lupus. This typically means that features of the lupus, including fatigue, muscle and joint aching and stiffness, fevers, and blood test abnormalities can worsen. Stress can also have indirect effects on lupus disease. Doctors who treat lupus have long accepted this concept of a relationship between stress and lupus.

LUPUS ANA: The ANA is not an indication of Lupus by itself. 90% of Lupus patients do have an elevated ANA. But many other diseases can cause an elevated ANA. So, retaking this test by itself would not be a definate indication of disease activity. Elsewhere on these forums are discussions about what tests are run in order to determing if lupus is present and to determine the activity of the disease. If, after reading them, you still have questions about ANA, please let me know and I will do all that I can to answer them!

I hope that I've been helpful to you
:D
Peace and Blessings
Saysusie

Saysusie
07-01-2007, 04:04 PM
TEROID :lol:
No, I have heard nothing from her and am becoming increasingly concerned. I hate having no way to contact her!! I almost want to ask if members could provide us with an emergency contact so that we can allay our fears when they are away for a while :?
Anyway...I am holding her up in prayer and just waiting to hear from her!!

Saysusie

juanerd
07-01-2007, 06:50 PM
Saysousie you said it all just there. I guess that answers my smokers question. Will quit effective immediately! As far as the ANA is concerned, after reading your advice I will keep away from this and just sit tight and wait till the doc gives me an okay to go back to work.

I swear also that the stress was a major cause of my latest bout and as such will proceed to reduce thru whatever means necessary!

You are a God send and will light a candle for you!

All the best for the best!
J

Saysusie
07-02-2007, 10:17 AM
You are MOST welcome! I am, and all of the other members are, here to help you whenever you need us!

:D
Saysusie

juanerd
07-02-2007, 11:52 AM
Hi Saysousie,

Further to my email yesterday, I could not find the section on this site that focuses on the tests which are conducted for SLE. My wife and friends believe that my level of denial may be beginning to work against me. I have for the most part crossed that threshold into acceptance and just want irrefutable evidence that I do have SLE.

FYI, what sold me was reading my blood tests which went back as far as last November. My sed rate was off the charts at 134 and my platelets, RBC's were both on the bad side. Outside of this my energy was sapped, especially late October onwards; so when my doctor ordered the ANA I was not surprised to see the positive number which coupled with my DLE convinced the doctors that I was on the cusp if not full blown SLE.

Also, outside of the disabling (at times) fatigue, my joints do ache in an odd way at varying times of the day.

Forgive the wordiness, but any thoughts?

Thanks,
J

PS How did you become so knowledgeable?!!!? I told my wife that you ought to be on the lecture circuit!

I guess my rheumy (as Teriod calls them) is right

Saysusie
07-03-2007, 09:31 AM
Hi Juanerd; I am much too dedicated to this site to be away from it in order to be on the lecture circuit (lol). But, thank you to you and your wife for thinking that I am qualified to do that!!

Anyway...here is probably an overload of information of Lupus testing. But, I am certain it will answer most of your questions. Let me know if you find anything confusing or just need more information!

Peace and Blessings
Saysusie

Lupus medical testing and a blood test can be done by the patientís physician or a specialist such as a rheumatologist or clinical immunologist. When a patient has many of the classic lupus signs and symptoms, it is much easier to make a diagnosis than when the symptoms are subtle and imitate other common illnesses. Lupus medical testing consists of checking for symptoms, getting a physical exam along with a complete medical history and a blood test for ANA (antinuclear antibody). Once this lupus medical testing and a blood test are done, if the patient both tests positive for ANA and experiences symptoms of Lupus, a diagnosis can be made. However, some physicians will want to do further lupus medical testing to reinforce the diagnosis.

In lupus medical testing, a blood test is used to look for antibodies to various substances that a person produces when she suffers from Lupus. This lupus blood test is helpful to either reinforce a diagnosis when the patient has symptoms and a positive ANA blood test or when a patient has a negative ANA blood test but the doctor suspects lupus.

Other lupus medical testing involves a blood test to determine a complete blood count (CBC). This blood test is useful in finding out how healthy a person is. A CBC blood test is also helpful in finding infections, finding out why a person experiences symptoms, and finding out how a patient responds to medication.

The complement test, a blood test that looks for low levels of complements, shows that the body is either busy fighting infections or destroying its own tissues. This blood test is useful in lupus medical testing because Lupus is an autoimmune disease which is a disease that causes the body to attack itself.

Erythrocyte sedimentation rate (ESR or sed rate) is a blood test that is useful in lupus medical testing because it shows conditions that cause inflammation. This blood test is also used in determining the effectiveness of certain medications used for the treatment of lupus. A fourth blood test that is used in lupus medical testing is C-reactive protein test (CRP). The CRP blood test is useful in lupus medical testing because CRP levels go down after the use of medications to treat Lupus and helps the physician watch conditions that cause inflammation.

Other lupus medical testing consists of urinalysis, Kidney biopsy, skin biopsy, computed tomography (CT) scan, magnetic resonance imaging (MRI), X-rays and echocardiography.

IN MORE DETAIL

In lupus medical testing, the blood test and other lupus medical tests are compared to symptoms and the results are interpreted by the physician. Lupus medical testing may have to be repeated several times because a person with lupus may test negative one day and positive the next. This will show the activity level of the disease. Unfortunately, there is no single test for lupus. If you suspect lupus, it is important to keep tract of symptoms, work closely with your doctor, and take the necessary tests.

ANA,FANA (Fluorescent)-Anti-Nuclear Antibody
Anti-DNA
anti-Sm antibody-_Antibody to the Smith antigen
anti RNP-Antibody to the Ribonucleoprotein
anti-Ro,(=anti-SSA(=anti-Ro))
anti-La,(=anti-SSB)
Complement,CH50,C3,C4
aCL, aPL, lupus anticoagulant
BUN (Blood Urea Nitrogen)
Urinary protein, proteinuria, albuminuria
Platelets- blood cells that aid in clotting.


Are you confused by the names of the blood tests doctors use to diagnose or monitor lupus? Do you know what the tests mean? If you are confused, perhaps the information below will help. In looking at the following information, remember:

An antibody is a protein (such as gamma globulin and other globulins) that the body normally makes to defend itself against bacteria (germs), viruses, and other things that cause harm. In lupus, the body mistakenly makes antibodies against a person's normal tissue.

An antibody is named according to the substance (antigen) which it is made to fight. Thus, an antibody induced by a polio vaccination is called anti-polio virus antibody.

Because the basic abnormality of lupus is an immune system that is in overdrive, most of the tests measure the degree to which the immune system is active.

Other tests measure the function of specific organs such as the kidneys.

A lot of these tests and names are confusing. Don't worry about such designations as mg/dL (milligrams per deciliter). These are technical terms that refer to a specific way of measuring one or another substance. Some laboratories use international units (IUs); some laboratories report the results of chemical tests in mols instead of milligrams. I've given the measurements that are most often used. If your laboratory reports your results in a different way, ask your doctor to explain which units are used and what is normal for that laboratory. I have not given numbers for tests that are either reported as positive/negative, or in cases where there are too many ways of reporting to summarize briefly.

Keep in mind that the statements above are just rough guides. There are always exceptions to every rule. I've listed the most common tests and the most common uses, but they may differ for you. If you are still confused, or you are in doubt, ask your doctor for an explanation.

Test: ANA, FANA (Fluorescent) - Anti-Nuclear Antibody

What test is for: An antibody against the nucleus, or central controlling part of each cell. All organs are made of cells and all cells have nuclei. ANAs have four basic patterns describing the way they look under the microscope. The patterns are "diffuse" (the whole nucleus lights up), "peripheral" or "rim" (only the ring around the nucleus does), "speckled" and "nucleolar" (two very specific spots light up).

What a positive test means: Almost all patients with lupus have a strongly positive test (still positive even when diluted more than 100 times, commonly expressed 1:100). Many normal people also have positive tests, usually less strong (1:10-1:30). The "diffuse" and "speckled" patterns are common in lupus, but are also seen in other diseases and normal people. The "peripheral" pattern is relatively specific for lupus. The "nucleolar" does not often occur in lupus. A positive test means lupus is a possible diagnosis.

What a negative test means: A negative test usually means that a patient does not have lupus, or that lupus is in remission. However, most patients in remission do not have negative ANAs.

Test: Anti-DNA - Antibody to Double Stranded Deoxyribonucleic Acid

What test is for: DNA is the major part of the cell nucleus, and is the stuff of which our genes are made. The anti-DNA antibody is usually the reason for the positive ANA. People who have a positive ANA who do not have anti-DNA have antibodies against other parts of the nucleus.

What a positive test means: An unequivocally positive test in a person with symptoms almost always means lupus is present. The higher the amount, the more likely the disease is active. Rarely, well blood relatives of lupus patients have positive tests, as do some patients with rare other diseases.

What a negative test means: A negative test does not mean that lupus is not present, since other tests can still be positive in a person who has had a positive test; a negative test usually means remission.

Test: anti-Sm antibody - Antibody to the Smith antigen

What test is for: The Smith (first patient) antigen is a protein that helps DNA stay in its correct shape as it goes about its business directing the cell how to do its work. Together, anti-Sm, anti-RNP, anti-Ro/SSA, and anti-La/SSB are known as ENA antigens.

What a positive test means: Like anti-DNA, this test generally means that lupus is present. False positive tests are very rare.

What a negative test means: A negative test does not mean that lupus is not present, since other tests can still be positive. Most persons with lupus have either anti-DNA or anti-Sm antibodies. Negative tests for both generally mean that lupus is not present.

Test: anti-RNP - Antibody to the Ribonucleoprotein

What test is for: The RNP antigen is similar to the Smith antigen, but has a different job in the cell.

What a positive test means: A positive test occurs in some patients with lupus but also in other related diseases. It helps to classify a patient but it is not usually useful to make a specific diagnosis nor to follow for worsening or recovery.

What a negative test means: A negative test excludes a related disease, Mixed Connective Tissue Disease.

Test: anti-Ro, (=anti-SSA (= anti-Ro)) - Antibody to the Rose (first patient) antigen; antibody to the Sjogren's syndrome A antigen; the test was described simultaneously in both lupus and the related disease.

What test is for: The test is designed to look for the Ro/SSA antigen similar to, but this antigen has a different job than the Smith antigen.

What a positive test means: The test is often positive in lupus patients and in patients with other related diseases. In pregnant women, it makes a complication known as neonatal lupus possible. Only about 1/4 of women with this antibody have a child who develops neonatal lupus.

What a negative test means: If both this test and the related anti La/SSB test are negative, the child of a pregnant woman will not develop neonatal lupus.

Test: anti-La, (=anti-SSB) - Antibody to the Lane (first patient) antigen, antibody to the Sjogren's syndrome B antigen.

What test is for: Similar to the Ro/SSA antigen.

What a positive test means: Similar to the Ro/SSA antigen.

What a negative test means: Similar to the Ro/SSA antigen.

Test: Complement, CH50, C3, C4 - Complement is a series of proteins that help antibodies fight antigens: CH50 refers to the amount of complement necessary to destroy 50% of red blood cells in an immune reaction. C3 and C4 are the third and fourth components of the complement proteins.

What test is for: Complement is used up in immune reactions such as lupus.

What a positive test means: Low levels of complement mean the body is undergoing a severe immune reaction, primarily in the kidneys. Lupus is one cause, but there are many others. CH50 is usually 150-300 units. C3 is about 80-150 mg/dL. C4 is about 15-40 mg/dL.

What a negative test means: Normal levels of complement make lupus inflammatory kidney disease unlikely. Other types of kidney disease, such as leaky kidneys or scarring, can still occur even if complement is normal. Other types of lupus do not usually lower complement.

Test: aCL, aPL, lupus anticoagulant, antiphospholipid antibody, aPTT, dRVVT - Antibody to Cardiolipin, antibody to Phospholipid, Activated Partial Thrombosplasin time; Dilute Russell Viper Venom Time.

What test is for: Cardiolipin is a phospholipid (a type of fat that contains phosphate). There are many other phospholipids, but cardiolipin is the one most frequently tested. The test can be performed on clotted blood. The lupus anticoagulant test (for antibodies to clotting factors) can be performed only on fresh blood since it measures the time it takes the blood to clot. Except for the different techniques, the tests measure approximately but not exactly the same things, so it is possible to have a positive aPL test and a negative lupus anticoagulant, and vice versa. The membranes that surround all cells are composed of phospholipids, aPTT and dRVVT are two specific clotting tests used to screen for a lupus anticoagulant antibody.

What a positive test means: An unequivocally and repeatedly positive test means a higher than normal likelihood of developing internal blood clots or problems with pregnancies. Weakly positive tests that come and go are common and generally not important. About 1/3 of lupus patients have either an aPL or lupus anticoagulant test positive. Normal aCL (immunoglobulin G, IgG) is usually under 15 GPL units, for immunoglobulin M (IgM), under 10 MPL units. Normal a PTT is usually under 35 seconds.

What a negative test means: A negative test markedly reduces the likelihood of internal clotting problems or certain types of pregnancy complications.

Test: BUN (Blood Urea Nitrogen), creatinine, creatinine clearance

What test is for: BUN and creatinine are two chemicals normally excreted by the kidneys; creatinine clearance is a determination of how much creatinine the kidneys can excrete in a given period of time.

What a positive test means: BUN and creatinine levels both rise when kidney function fails; creatinine clearance falls. Normal BUN is usually 15 mg/dL or less, creatinine under 1.0 mg/dL, and creatinine clearance more than 80 ml/min.

What a negative test means: Normal levels mean that kidney function is normal, but do not mean that everything about the kidney is normal.

Test: Urinary protein, proteinuria, albuminuria

What test is for: The kidneys do not normally excrete protein.

What a positive test means: Kidneys that leak protein are abnormal. The more they leak the worse the injury. Normal is under 1/4 gram in 24 hours. Over 4 grams a day is high.

What a negative test means: Kidneys that do not leak protein are usually normal or near normal. Rarely, function can be abnormal even without protein in the urine.

Test: Platelets - blood cells that aid in clotting.

What test is for: Platelets are used up in severe clotting and can be reduced in number by antibodies to platelets.

What a positive test means: Low platelets occur for several reasons in lupus. All reasons need to be checked out since very low platelets are associated with spontaneous bleeding. Normal platelet count is around 150,000/cubic mL or blood.

What a negative test means: A normal platelet count means no problems in this system. Platelet function can, at times, still be abnormal, even if the number is normal.

TERIOD
07-03-2007, 11:21 AM
Hi Saysousie,

Further to my email yesterday, I could not find the section on this site that focuses on the tests which are conducted for SLE. My wife and friends believe that my level of denial may be beginning to work against me. I have for the most part crossed that threshold into acceptance and just want irrefutable evidence that I do have SLE.

FYI, what sold me was reading my blood tests which went back as far as last November. My sed rate was off the charts at 134 and my platelets, RBC's were both on the bad side. Outside of this my energy was sapped, especially late October onwards; so when my doctor ordered the ANA I was not surprised to see the positive number which coupled with my DLE convinced the doctors that I was on the cusp if not full blown SLE.

Also, outside of the disabling (at times) fatigue, my joints do ache in an odd way at varying times of the day.

Forgive the wordiness, but any thoughts?

Thanks,
J

PS How did you become so knowledgeable?!!!? I told my wife that you ought to be on the lecture circuit!

I guess my rheumy (as Teriod calls them) is right

irrefutable evidence???? this almost non existant with this disease, many of us that have it have taken years to DX ive had this crud for many years and just got DX last december, if i were to hazzard a guess, i would say the doctors dont know whats causing the protein right??, only after one of the many ana tests i took prooved positive along with high amounts of protein and hi blood pressure, peritonitis, RA,stroke and many other smaller ailments was i DX with sle lupus after fighting it for 6-7 years, after this, denial wasnt an option, it was more of a relief to know what the possible cause was

one more thing to add, stress plays a MAJOR roll, last year after stressing myself out with two jobs and school i had a major flare which contributed to my diagnosis

TERIOD
07-03-2007, 11:33 AM
WOW. saysuzie, how can one person retain so much information,Im severly impressed, it gets hard for me to remember what i have my degree in sometimes,

My best wishes go out to Marycain, if I were you I would ask, If a moderator cant do it, who can??

Saysusie
07-04-2007, 07:56 AM
I think you are right Teroid. Perhaps members would be willing to provide that information to only me or Conrad in order to preserve their privacy. I will do a poll sometime next week to see how the members feel about it and how they feel is the best way to provide an emergency contact!!

Peace and Blessings
Saysusie

juanerd
07-06-2007, 03:33 PM
Hi SSousie,

Geez, tha was alot of great information all of which I copied and pasted to my Word program and then printed for further study. It says it all for me and I have a follow-up visit with my rheumatologist next week. At that time I will discuss further testing options and then following the visit will let you know how I fared at the appointment.

Once again you re a God-send, and am so glad I joined this site.

Take good care and stay in touch. Now if I could only put on some weight.
I am down 25 lbs from my normal weight and my waist size makes me feel like I am in the Cub scouts.

All the best,
John

Saysusie
07-07-2007, 10:12 AM
Hi John;
You are most welcome and, yes, I would really like to hear how your next visit with your rheumy goes.
I am a big advocate of being well informed. As you continue to learn about Lupus and how it affects you (since each of us is different), what treatments are available and what symptoms they work for, what other ailments tend to tag along with Lupus and how they can be treated, etc., I believe that you will be more able to be an advocate for YOUR health care and will be able to make informed decisions with your doctor and, at the very least, know how to stand up for yourself and demand action!!
I wish you the very best and know that we are here to help arm you with that information, to answer your questions and to provide as much support as we can.

Peace and Blessings
Saysusie