The first thing we need is a basic understanding of Addison's Disease.  I hope to give you an explanation as well as a personal glimpse into what it is like to have it.  As I said on the index page I will not be giving credit here as that would be impossible.  I have collected this information over the past twenty-two years from various sources, source types, and from personal experience as well. DEFINITION Addison's Disease is a rare disease that affects the adrenal glands.  Although, it only affects about one person out of every 100,000 people, it occurs in all age groups and in men and women equally.  Addison's Disease occurs when the adrenal glands do not produce cortisol and in some cases, aldosterone.  Cortisol affects nearly every organ in the body having hundreds of effects in the body.  The most important function of cortisol is to help the body respond to stress.  And stress isn't necessarily just the bad things that happen to us.  Good and positive things create stress as well. ETIOLOGY Addison's Disease or the failure to produce adequate levels of cortisol can occur due to several different reasons.  It may be because the adrenals have stopped working or because the pituitary gland is no longer telling it to work.  Either way the body is no longer getting the cortisol it needs.  Most cases of Addison's Disease are caused by the gradual destruction of the outer layer of the adrenal glands by the body's own immune system.  For reasons unknown the immune system produces antibodies that attack the body's own tissue or organs and slowly destroys them.  Adrenal insufficiency occurs when at least ninety percent of the adrenals have been destroyed. SYMPTOMS Since the symptoms of Addison's Disease usually begin gradually, they are usually ignored until a stressful event like an illness or an accident causes them to become worse.  This is known as an addisonian crisis, or acute adrenal insufficiency.  It is at this point that the symptoms are severe enough to seek medical treatment before a crisis occurs.  However, for about a quarter of us with Addison's, the symptoms first appear during an addisonian crisis. Weakness Muscle weakness Unintentional weight loss Nausea Vomiting Dehydration Chronic diarrhea Loss of appetite Darkening of the skin in some areas Paleness Skin rashes on the feet and hands Sores on the inside of the mouth Slow, sluggish, and lethargic movements Slow and sluggish speech Changes in the blood pressure or pulse Excessive sweating on the face and or hands Headaches Dilated pupils Skipping or stopping of menstrual cycle Confusion Involuntary, abnormal eyelid movement Fluctuating mood Difficulty paying attention Episodes of amnesia Impaired short-term memory and memory loss Hallucinations These are the classic symptoms of Addison's Disease.  Not everyone will have each and every symptom and just to keep things interesting some will have symptoms that are just the opposite, as I did.  This will depend on whether there are any other disease processes at work.  In my case, I did not have the unintentional, or intentional weight loss.  At the same time I did not have the vomiting and diarrhea either which may be what leads to the weight loss.  I did not have any of the darkening of the skin neither.  I cannot recall whether my face and palms would sweat but since I was so cold all the time, I can't imagine they did.  As you can guess, it is these inconsistencies that makes diagnosis so difficult. TREATMENT Replacement corticosteroids are necessary to control the symptoms of Addison's Disease and they must be continued for life.  Usually a combination of hydrocortisone and florinef are given and they may need to be increased during times of stress.  Since infection, injury, or profuse sweating can cause Addisonian crisis, you must call your health care provider for possible temporary increases in medication. When a crisis occurs an intravenous or intramuscular injection of hydrocortisone must be given immediately.  Those of us with Addison's Disease are generally taught to give ourselves an emergency injection of hydrocortisone during times of stress.  It is important for anyone with Addison's Disease to always carry a medical identification card that states the type of medication and the proper dosage needed in case there is an emergency. Medication should never be skipped and if it cannot be kept down due to vomiting, the health care provider should be notified.  Also, report any fluid retention and weight gain to your health care provider.  An appointment should be scheduled if weight increases progressively, your ankles begin to swell, or other new symptoms develop. Primarily, for me, treatment has been Hydrocortisone 20mg BID [twice a day] and Florinef 0.1mg QD [once daily].  I have been told repeatedly that this is a hefty dosage but after having been on it for so long, the doctors feel the chances are slim that I could ever tolerate a decrease. MY POINT of VIEW Living with Addison's Disease has created a lot of changes in my life.  From everything I've read it isn't necessarily supposed to but nevertheless it has.  Having never met anyone else with Addison's Disease I couldn't tell you how much is Addison's Disease and how much is the combination of everything else.  Or for that matter how much may be a new problem yet to be diagnosed. The first thing I needed to learn was to take my medicine.  It's amazing how hard this one thing was to learn and how much of a difference it made when I took it correctly. The next thing I had to learn is when and how much to adjust it during times of stress.  Early on in my diagnosis, I was taught by my doctor to adjust my medicine according to how I felt.  I do not know if the doctor trusted my judgment or simply didn't want to be bothered.  But to be honest, I think it was just as much a learning process for him as it was for me. The next adjustment came after I started working for a living.  It was then I learned I had physical limitations and began adjusting my medications accordingly.  Pushing myself beyond these limits, either physically or emotionally, can and has taken its toll.  When I had to function past my capacity, it was not unlike me to increase my medication to match the task at hand. For instance, if I had a sixteen hour shift to work, I would increase my medication to enable me to do so.  This is not recommended, certainly has its drawbacks, and I am not suggesting it to anyone.  It is just something I do in order to do the things I needed to do.  Even that has its limitation. There does come a point when I have nothing left to function on and at times it really doesn't take that much.  I had found I could work and do nothing else but sleep or I could stop working and have energy enough that I could be awake when I was home.  I just seem to burn out faster than most and from much less output. This lack of energy to participate in life has created secondary problems as well.  Friends and family often feel neglected or ignored when invitations are declined.  And it doesn't seem to matter how often or in what way I try to explain it, they just don't seem to understand.  It's hard to explain just how involved going for a simple cup of coffee can be.  As I've said before, since I don't necessarily look sick it makes it all the more difficult for people to comprehend. Besides medication adjustments, there are a few tricks I have either been taught or stumbled across along the way to avoid an Addisonian crisis for me. I cannot stress enough here that I have never been given this advice by a health care professional.  It is something I have done of my own accord.  Some may be approved by the medical profession but most likely not.  And I am not suggesting that anyone try them! Just telling you MY story. During times of extremely hot weather, I found I was going into crisis quite frequently and would end up in an emergency room getting an IV of sodium and hydrocortisone in the form of dextramethasone sodium phosphate.  And since I no longer had insurance and was now considered to be uninsurable, this was becoming quite expensive and I thought it would be prudent to avoid this cost whenever possible.  So, I had to find another answer. What I found that helped me, when it was really hot and I was sweating, was Alka Seltzer.  Yes, Alka Seltzer.  I stumbled upon this when I was sick once and took the Alka Seltzer and found I could actually stand when I had been having such orthostatic hypotension [drop in blood pressure when you stand causing a feeling like you might pass out] that standing was for very short time only.  I always had this strange precursor when I was low in sodium. I would smell salt.  Not just crave it, but smell it too.  And since Alka Seltzer has sodium in it, it replaced lost sodium in a form I could tolerate.  Now, if it was really hot and I had to run around in it, I would sometimes take as many as eight an hour.  It would keep my blood pressure up enough so I did not feel like I was going to pass out every time I stood up and it seemed to keep me out of the hospital.  I could usually tell when it was getting close to that point because I would get a headache, become nauseated, feel faint, and couldn't think straight. As I've said before, these practices are not necessarily the right thing to do nor am I recommending them to anyone else. They are just some things I found that worked well for me. As hard as learning to take and adjust my medicine was, it was an easier adjustment to make than the lifestyle adjustments I've had to make.  I have always heard that there weren't any real lifestyle adjustments necessary with Addison's Disease but they [I've always wondered who they were] haven't walked a mile in my shoes.  I better make that a block because I probably couldn't walk a mile.  LOL... But as hard as it may be, sometimes, I think it is harder for the people in my life than for me.  I've learned over the years that primarily I am just like almost everyone else.  I have good days and I have bad days.  But, generally, the more important it is that I have a good day usually means I probably won't because the added stress and strain necessary to make it to that point has left me absolutely drained.  When that happens I'm generally left with two choices.  Should I stay home or should I go?  If it is something my significant other wants me to do, I am generally talked into it with the proverbial "come on, you'll have fun."  So, I go and guess what?  Whether I am having fun or not, most of the people around me don't think I am because I end up being a bystander.  It ends up taking everything I have just to be there let alone be an active participant.  So, in reality I would have preferred to stay home where I would have felt better and would not have dragged those around me down.  But on the other hand, when I stay home I'm given so much grief for having missed something somebody considered crucial, that I feel guilty.  So, I'm stuck between a rock and a hard place.  That's probably the hardest part of all this.  The disappointment that my friends and family suffer when I do not feel good ends up making me feel worse.  And that is something I have never been able to get them to comprehend but maybe, eventually, we'll all understand. 2000 UPDATE Well, it seems ALL the doctors are complaining about the amount of steroids I take so I have told them I would attempt to decrease it.  They are in agreement that if I cannot tolerate it, I cannot tolerate it.  Period.  End of statement and I go back to a dosage I can function on.  So, starting the middle of April, I started gradually reducing my steroids from 30mg/day to 5mg/day by the end of December.  The rheumy and neuro are both thrilled.  I am tolerating it but how much energy does it take to sit here in this recliner with my keyboard in my lap and mouse on the arm of the chair?!?  LOL... The Florinef remains at 0.1mg... unchanged since it was started. 2001 UPDATE Well, you will read in the update section the hows and whys behind it, but I am back on 30mg/day. For the most part I am stable and have not had any addisonian crisis. 2002 UPDATE Well, another change was made in my steroid dosage at the beginning of the year. So, I started taking 20mg/day. Sheesh... I wish they'd make up their mind. A move in April has me seeing all new doctors. The florinef has been increased for the first time ever and I am taking 0.2mg/day. The endo would like to see me increase my steroids back to 30mg/day but since I have lost 50 pounds since April, I am not willing to take a chance that all that work will be vain. Can't they ever make up their mind?

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