Another FYI post

Pearls and Dreams

Ok ...one on comment, 3 on email have said to please post about the lupus ...so I will.
The most important thing to remember is that this is how the lupus effects ME and every single lupus patient is different. In the Myasthenia Gravis world, we call ourselves "snowflakes" because no two myasthenics are alike, and I believed that, till I found out about the lupus diagnosis and started to educate myself. Myasthenics come far closer to fitting into a stereotypical pattern than does a lupus patient. So, that being said, I'm going to start with the diagnostic criteria, then talk about SOME of the medications/treatments that are used, then I'll talk about how the lupus has specifically effected yours truely ... IF I get tired ... I just may hit publish mid post, and leave you hanging, and finish it tomorrow.

American College of Rheumatology
The 1982 revised criteria for classification of systemic lupus erythematosus

Criterion
Definition

1. Malar rash
Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds

2. Discoid rash
Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions

3. Photosensitivity
Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation

4. Oral ulcers
Oral or nasopharyngeal ulceration, usually painless, observed by physician

5. Arthritis
Nonerosive arthritis involving 2 or more peripheral joints, characterized by tenderness, swelling, or effusion

6. Serositis
a) Pleuritis--convincing history of pleuritic pain or rubbing heard by a physician or evidence of pleural effusion
OR
b) Pericarditis--documented by ECG or rub or evidence of pericardial effusion

7. Renal disorder
a) Persistent proteinuria greater than 0.5 grams per day or grater than 3+ if quantitation not performed
OR
b) Cellular casts--may be red cell, hemoglobin, granular, tubular, or mixed

8. Neurologic disorder
a) Seizures--in the absence of offending drugs or known metabolic derangements; e.g., uremia, ketoacidosis, or electrolyte imbalance
OR
b) Psychosis--in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance

9. Hematologic disorder
a) Hemolytic anemia--with reticulocytosis
OR
b) Leukopenia--less than 4,000/mm<>3<> total on 2 or more occasions
OR
c) Lyphopenia--less than 1,500/mm<>3<> on 2 or more occasions
OR
d) Thrombocytopenia--less than 100,000/mm<>3<> in the absence of offending drugs

10. Immunologic disorder
a) Anti-DNA: antibody to native DNA in abnormal titer
OR
b) Anti-Sm: presence of antibody to Sm nuclear antigen
OR
c) False positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption test
d) Positive finding of antiphospholipid antibodies based on 1) an abnormal serum level of IgG or IgM anticardiolipin antibodies, 2) a positive test result for lupus anticoagulant using a standard method, or 3) a false-positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption test.

11. Antinuclear antibody
An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with "drug-induced lupus" syndrome

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* The proposed classification is based on 11 criteria. For the purpose of identifying patients in clinical studies, a person shall be said to have systemic lupus erythematosus if any 4 or more of the 11 criteria are present, serially or simultaneously, during any interval of observation.

Tan EM, Cohen AS, Fries JF, Masi AT, McShane DJ, Rothfield NF, et al. The 1982 revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1982;25:1271---7.
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Medications used to treat lupus are typically an anti inflammatory, Plaquenil (anti malarial), and prednisone are the first line of defense in lupus.
If the lupus invades an organ, especially the kidneys, then they will go to the 'big guns' the immunosuppression drugs (the ones that are standard of care in Myasthenia Gravis). Often, Cellcept, Imuran, Methodextrate, Cytotoxin, or Cyclosporin (the latter not used as frequently in lupus as in Myasthenia Gravis).

Lupus patients are encouraged to get a good balance of exercise, rest and nutrition to best take care of their body. Not enough exercise, and the joints stiffen and deteriorate faster than what is necessary.

Treatments like plasmapherisis and IVIG are not typically used to treat Lupus, but they ARE used.

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Starting with the criteria & my own case of lupus ...
I have :

Photosensitivity ... burn way too easily (did not happen before lupus... before, I burned slightly, then tanned darkly) Last year, I was in the sun for 45 minutes and had on 75 SPF sunscreen, applied twice ... and still burned and it took 2 weeks to heal. Unfortuneately, while I had the burn, I had to go see my neurologist who happens to work on the same floor as my dermatologist. I had this horrible burn as I passed my dermatologist in the hallway ... he, was not amused at his fair skinned, blue eyed, lupus patient on cellcept with a very very bad burn. So much so, he remembered it when he saw me SIX months later!!!!!!
Slight funky rash with sunburn.

Oral Ulcers ...this is a toughy. I keep getting them and keep getting them and keep getting them and keep getting them ... I just about get them all healed up, they're almost gone and wham! they start back up again. They can be treated with gargling Milk of Magnesia, using chloreseptic or an Rx'd mouthwash ... but I haven't found a way to prevent them.
The rheumatologist explained the M.O.M. working like this ... the antibodies causing the lupus, are attacking the mouth, which causes a build up of too much acid in the mouth, that causes the oral ulcers so often seen in lupus. The M.O.M. helps to rinse away the extra acid, helping the sores to heal faster. Whatever it does, it works, it helps, and nothing else had ... The chloreseptic helps with the pain ...kind of. (he did say do NOT swallow the M.O.M. or your bowels would be working overtime!) I also found, that it works as a great mouthwash rinse .. brush, floss, rinse with that and you STILL get little food particles pulled out from between the teeth!!!!!
weird! (that may have been TMI)

Arthritis ... inflammatory arthritis in my feet, hands, elbows, knees, sturnumn (sp?) (medical term for this is chostochondritis) not sure if my shoulders are involved or not. They get hot, red and inflammed ..but they don't always manage to flare with the rest of the lupus ...I think the shoulders have more to do with degenerative arthritis and hypermobile joints and tendonitis than lupus ... not sure on that one.

Pleurisy .. recurrent ... was frequent before I started prednisone last June, I've had 3 mild cases since then.

Blood tests (above they call it serum)
my Anti dsDNA is 454. Normal is 200 or below. 200 and above is lupus, 300 and above is severe.

my ANA is barely positive with a ratio of 1:160, homogenous pattern (1:40 and below is normal, 1:80 is considered positive, so, as you can see, 1:160 is just the next jump up.)

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those are my criteria symptoms and other things that get blamed on the lupus ...
dizziness
fatigue
headaches
fluish feeling
raynauds syndrome (hands and feet get cold, and won't warm up on their own)
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Like the myasthenia, the symptoms can be better or worse on any given day. They can be better or worse IN any given day.

So, that is MY lupus in a very small nutshell ... anyone still reading?