Did Michael Jackson Have Discoid Or Systemic Lupus?

June 29th, 2009 → 12:22 pm @ A.D. Odom

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michael_jackson
Note brace and tape on fingers

A friend called me last night after reading an article on People Magazine’s website quoting Dr. Deepak Chopra.  In the article, Chopra says Michael Jackson had lupus and he goes on to say even his son knew he had lupus.  This caused my friend to ask me if I thought lupus caused MJ’s heart attack.  My answer, if MJ had Lupus SLE – or what is known as Systemic Lupus – then yes, it could have caused a heart attack or what is known as sudden death or cardiac arrest.

Over the years I have heard the words “Michael Jackson has lupus” over and over again but I had never heard or read anything confirming MJ having systemic lupus.  Not a thing.  There have been some hospitalizations that have raised an eyebrow for me in recent years but the only confirmation I had or heard came in 1984 when MJ was badly burned when his hair caught fire during filming of a Pepsi commercial.  While MJ was in the hospital, doctors and the media reported lupus lesions were found in his scalp and it was said he had Discoid Lupus.

About Lupus Generally

Discoid lupus, or Lupus DLE, is a separate and different animal from systemic lupus or Lupus SLE.  According to WebMD’s eMedicine:

Discoid lupus erythematosus (DLE) is a chronic, scarring, atrophy producing, photosensitive dermatosis. Discoid lupus erythematosus may occur in patients with systemic lupus erythematosus (SLE), and some patients (<5%) with discoid lupus erythematosus progress to SLE.1 Some patients also have the lesions of subacute cutaneous lupus erythematosus (SCLE), and some may have a malar rash. Patients with discoid lupus erythematosus rarely fulfill 4 or more of the criteria used to classify SLE. Serologic abnormalities are uncommon. Therapy with sunscreens, topical corticosteroids, and antimalarial agents is usually effective.

Lupus DLE

Note that less than 5% of patients with discoid lupus go on to develop Lupus SLE.  Though 5% looks like a pretty small number, that 5% represents thousands if not hundreds of thousands of people.  When you hear a person has lupus, it is never noted whether that person has Lupus SLE, DLE or SCLE.  You just hear the word lupus and that could mean anything from skin lesions only to kidney, lung or heart disease.

In MJ’s case, the lesions were found in his scalp after the accident, while he was in the hospital and unfortunately, much of what was done subsequent to his accident to repair his scalp was never quite successful.  There were reports that the scaring never fully healed which is common with discoid lupus.  MJ wore a host of wigs and some said this was done to cover up gray hair.  If the surgeries to repair his scalp were unsuccessful or, if he had discoloring alopecia – which is common with Lupus DLE – then wearing wigs makes sense.

A few years ago I attended a lupus seminar for health care professionals and learned cosmetic surgery is not a good idea for those diagnosed with discoid lupus.  MJ, unfortunately, had cosmetic surgery performed on his nose, chin (the dimple) and possibly other areas of his face.  According to one of the doctors who spoke at the seminar, she did not advise her patients to seek out plastic surgery unless their discoid lupus was in remission.  I don’t know if MJ was prescribed this drug or not but anti-malarial drugs like Placquenil are typically prescribed to keep discoid lupus at bay.  Patients on this drug can have successful results from plastic surgery but, there is no guarantee.  If he was on an antimalarial drug he needed to protect his eyes and skin from sunlight and, unfortunately, these drugs can cause damage to your retinas and blindness which coincides with a more recent rumor that MJ was losing vision in either one or both eyes.

In the aforementioned seminar, a good deal of emphasis was placed on the dangers of plastic surgery for individuals diagnosed with discoid lupus.  I was surprised to hear this and thought about MJ during the discussion because they said plastic surgery could exacerbate the condition and could cause further scaring and/or difficult or slow healing.

In fairness to plastic surgeons, not all of them are well versed in autoimmune diseases, particularly if the patient never mentions it.  Some will not bother viewing your health records either.  That said, since Lupus DLE, SLE and SCLE (subacute cutaneous lupus erythematosus) are hard to diagnose and many go undiagnosed for years, it is not uncommon for a plastic surgeon to proceed knowing nothing about the patient’s lupus or what effects the surgery will have on their skin.  Many simply don’t know.  Those who do know will defer surgery until such time the patient is in remission.  Now ask yourself, what doctor is going to pass up that much money?

Note, MJ walked around with a hat, facial coverings, and an umbrella to shield his body from UV light. That is a must with discoid lupus.

Lupus DLE to SLE

MJ1
Early signs of vitiligo

Here’s where Lupus DLE and SCLE gets tricky.  When the lesions fall below the neck there is a chance the patient will develop Lupus SLE.  If a patient develops what is known as acute or subacute cutaneous lupus, doctors will watch their patients closely and will begin testing for high levels of ANA proteins in the blood, protein in the urine, and joint pain.  They will look for nonspecific skin lesions displaying anywhere on the body and of course any rash that occurs below the neck will be cause for suspicion.

MJ was diagnosed with vitiligo which is another autoimmune disease.  Where some will develop splotchy discoloration over parts of their body, MJ saw the disease spread over his entire body.  He is not the only one.  There is a former New York model, Jeffrey Stanton Bell, who also saw the disease spread across his entire body.  It does happen.  This would place MJ in the category of skin disease that passed the neck line and now the question, could this have put MJ in that <5% category of those who go on to develop Lupus SLE?  In my opinion, it could have.  Since I am not a doctor and cannot say this with certainty, MJ began having lots of health problems after this.

In 1990, MJ was hospitalized with something called costochondritis.  This is one of many disorders associated with autoimmune diseases.  You can also experience this very painful condition if you have been doing strenuous exercise.  I experienced this in 1989 and called an ambulance to my house because I thought I was having a heart attack.  The paramedic asked me if I had been doing the “rough & tumble” or strenuous exercise.  When I saw my doctor later I was told I had experienced costochondritis which is an inflammation of the cartilage that connects a rib to the breastbone (sternum). It causes sharp pain in the costosternal joint – where  your ribs and breastbone are joined by rubbery cartilage. The pain caused by costochondritis can mimic that of a heart attack or other heart conditions.

If MJ’s bout with costochondritis was brought on by dancing and singing, that’s one thing.  It could have been a sign of something more sinister happening within his body which would represent one more thing to add to the shopping cart for Lupus SLE.  If the costochondritis was brought on by Lupus SLE, it would mean either MJ had undiagnosed Lupus SLE – which is possible and happens often – or his discoid lupus went systemic around this time.

In December 1995, MJ collapsed in New York during rehearsal for a TV special and was described as “dangerously ill”.  According to his doctors, MJ had a viral intestinal infection that led to nausea and dehydration and he spent nearly a week in the hospital.  What I remembered of this hospitalization was seeing no photos of MJ after his release from the hospital.  It’s possible I missed them.  Was he put on prednisone or some steroid?  I don’t know and this is pure speculation on my part.  I will say intestinal problems are common with lupus and there are numerous autoimmune diseases that affect the intestines.  If this was an autoimmune disorder we have yet another item for the Lupus SLE shopping cart.

Now, let’s talk about steroids.  They will change your appearance; they will bloat your body, bloat your face and make you fat.  Would MJ go for that?  Probably not.  If folks talked about his skin, his weight and his hair, they most certainly would have talked about his being fat.

fingertapeAnother curious thing MJ did was tape his fingertips.  In 2005, I too taped three fingers on my left hand.  Why?  Raynaud’s phenomenon.  From MedicineNet:

Raynaud’s phenomenon (RP) is a condition resulting in a particular series of discolorations of the fingers and/or the toes after exposure to changes in temperature (cold or hot) or emotional events. Skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. Initially, the digit(s) involved turn white because of the diminished blood supply. The digit(s) then turn blue because of prolonged lack of oxygen. Finally, the blood vessels reopen, causing a local “flushing” phenomenon, which turns the digit(s) red. This three-phase color sequence (white to blue to red), most often upon exposure to cold temperature, is characteristic of RP.

I had this bad in both hands but, when the hands were not purple or discolored, the fingertips were red, inflamed and sensitive to touch.  I taped my fingers because this protected me from touching something and going through the roof – or to the moon – with pain.  Was this the case with MJ?  I don’t know.  He taped the fingers on his right hand, I taped fingers on my left hand.  He could have turned his painful ordeal into a fashion statement, like the hats and aviator sunglasses he needed to wear to protect his scalp and eyes from UV light.

In December 2002, MJ began walking with crutches and his left foot was wrapped in bandages.  He said this was due to swelling from what he described as a spider bite.  It’s possible or was this something else.  With Lupus SLE anything is possible, gout, swelling of the ankles or heels of the feet, and if the immune system is in overdrive, any infection will go in to outer space in a New York minute.  Been there, done that, got the t-shirt.  Again, if he had Lupus SLE, this would be another item to add to the shopping cart

Stress And Lupus

Now, let’s go to 2005 and the trial in Santa Maria.  Stress will shoot Lupus SLE into orbit as wmjackson3ell.  Flares are a lupus sufferer’s worst enemy and I suspect MJ had many of them during the trial.  I was there the day he jumped atop the SUV and began dancing.  That day was the beginning of the trial, however, as the trial wore on, MJ got sicker and sicker.  He had back pain, was hospitalized briefly and appeared at court in his pajamas.  At that time I had been diagnosed with Lupus SLE and wondered if the talk of MJ having Lupus beyond Discoid Lupus was true.  He was certainly displaying all of the signs of a person with Lupus SLE.  By the end of that trial MJ was spent, both mentally and physically.

Stress is bad on a body generally, with Lupus SLE, stress will literally kill you.  Since MJ was preparing for a concert – a rather large and very ambitious one at that – as a perfectionist, if he didn’t feel up to the task and if his body had been taken down by lupus, the stress of this could have led to his death.  If he had Lupus SLE and if his immune system started attacking his heart, yes, it’s quite possible he suffered a heart attack or cardiac arrest .

There is a video on YouTube of a young woman’s parents telling the story of their daughter’s trip to a conference out-of-town.  She was perfectly fine when she left, they talked to her while she was there, and she was fine and healthy.  Sometime between the last known conversation with her and the next day she was dead from cardiac arrest.  With Lupus SLE, the immune system will kick up and attack the kidneys, the heart, lungs, thyroid, pancreas, and other internal organs and systems.

There was another rumored report that MJ had a rare lung disease called Alpha-1 antitrypsin deficiency.  This is an inherited disease and is more common in white populations, less common in black populations.  I don’t know if he had this and the MJ camps vehemently denied the allegation.  If he did have a lung disorder it might have been any number of autoimmune lung disorders like sarcoidosis and others.  He might have even suffered a brief bout of pleurisy.  I really doubt the Alpha-1 diagnosis.

Pain Medications

I will honestly say I took pain medication prior to my hospitalization and my pain medicine of choice was ibuprofen – also known as Motrin and Advil.  This decreased my pain significantly and I was not taking 200 mg of the drug.  I often popped 800mg at a time.  The joint and muscle pain can be overwhelming and if you have to work, you do what you need to do.  After my hospitalization and being diagnosed with lupus nephritis, I now cannot take ibuprofen because it is bad for the kidneys, like Tylenol – also known as acetaminophen – is bad for the liver.  Today, I live with the pain because the alternatives are Vicodin and opiates like OxyContin.  I have chosen to leave all of them alone.

In MJ’s case, being a performer, I can see why someone would go for the stronger drugs.  Again, joint and muscle pain can be overwhelming if you don’t know how to deal with it.  Popping a pill is easy and the results are immediate.  With lupus, particularly when you are around those who do not understand the disease, you will be labeled lazy, uncooperative, and so much more if you complain of something no one can see.

Getting up in the morning for a person with severe Lupus SLE can be one hard road to tow.  You’re tired, you have joint and muscle pain, you feel as if you haven’t slept in days, there is this 40 pound or more weight on your body and gravity is the heaviest of the weights.  You really would like to stay in bed all day and not move.  Anyone with the means to do this will start their day with an upper of some sort to get them going and then a pain pill of their choosing to silence the pain.  If you are a performer, business person, or someone who has to move and do every single day of your life, this is breakfast.  Unfortunately, you are also inviting something called a heart arrhythmia when you do this.  Your upper could be something like too many cups of coffee and your pain pill could be way too much Vicodin or an opiate.  I can see the heart attack coming here.

With lupus, you have to stay under a doctor’s care.  You cannot self medicate because what worked last week or last year may cause you great harm today.  Depending on where the flare is attacking your body, particularly if you become severely anemic as I learned earlier this year, something you thought might work might kill you.

Then There’s The Food Thing

To add something else as well and again, this is pure speculation.  I don’t eat much either.  Some of the medications I take cause me a lot of stomach discomfort and I’ve been hung over the porcelain throne throwing up meals.  I am not anorexic or bulimic but you just don’t want to eat when you think you’re going to suffer stomach upset as a result.  Food becomes less appealing.  You can only swallow so many Tums a day and if you are an active person, eating on the run can present one horrible set of circumstances when you’re feeling queasy.  Not eating is also bad for your heart.  We have to force ourselves to do it.

I heard MJ had a personal chef at one point, don’t know if he could afford it in recent years but some of the food out here will kill you too and MJ seemed very aware of this.  You really become a funny eater after being diagnosed with Lupus SLE.  If you’re not, you could do great damage.

Summary

I have to give MJ a lot of credit for incorporating fashion and function.  He taped his fingers and made it a style.  He might have been masking the redness of his fingertips or protecting his fingers from the pain one would feel from Raynauds when handling microphones.  Dropping the mic and screaming would not have been cute.  He also wore hats and sunglasses to protect himself from harmful UV rays and he incorporated these into his fashion garb. He wore casts, braces and kneepads to possibly protect against the pain from arthritis.  It makes good sense to me, particularly the knee pads, I’d like to have a few of those myself.

In closing, Lupus DLE and SLE is not nice.  There’s a lot of suffering with this disease.  You will have good days and bad days and the bad days can be rough.  Depending on how you manage the disease, you can either live a long and healthy life or a life filled with pain and discomfort brought on by other medications like opiates or excessive use of painkillers, uppers and whatever else is out there.  If you are a person who has a stressful profession and you cannot and will not slow your role as they say, the stress can and will kill you.

You have to watch fats, sugars, caffeine intake, the amount of protein and sodium, and other chemicals that can be harmful.  Depending on what medications you are taking, you may not be able to eat or drink certain foods or juices.  Over-the-counter remedies must be looked at carefully along with exercise and the amount of exercise you are doing.  Then there are days when you will just have to stay in bed and get plenty of rest.  Then there are the days when you will have to cancel all commitments because the body can’t take it.  The 10 to 50 concert tour and the stress of preparing for the tour could have caused a flare.  A flare can come on as anemia, pluersy, brain seizures, heart attack or stroke, kidney disease, severe swelling of the joints, a lung condition — pick one — edema, sudden blindness, swelling in the back, cartilage, etc., high blood pressure, and so much more.  When treated, they will eventually go away.  If it is not treated properly, you could die.  Plain and simple.

Additionally, you have to learn to not listen to a lot of folks, particularly those who don’t know a thing about Lupus.  Folks may call you lazy, uncooperative, crazy, faking, and God only knows what.  They are not paying your bills and they are not living in your body.  Distance yourself from them.  Others will tell you it’s mind over matter and will try to make you feel bad for not going with them somewhere.  Limit the amount of poison in your life and that includes people.  If you’re married to them, lock them out of the house.

Today, I’m feeling well thank you and I’m on a chemo drug called Cytoxan.  In seven months, if all is well, I’ll probably still feel well.  And then, I may not.  I may be on another drug then and I’ll be tired and listless again.  Who knows.  But, in the end, I do know what I need to do for me and that’s what matters, not what others say or think.  There are folks right now who are very angry with me for not performing or doing at the level of what I was once able to do.  I ain’t doing it and I ain’t killing myself for someone else.  I cannot do a lot of things now and no amount of verbal pushing will make me do it.  The answer is no.  I am thankful I was able to live long enough to appreciate the word “NO”.