Treatment, and by the way, "Talk to your doctor about all the potential side effects!"

At my September 2013 visit to National Jewish Health in Denver, Colorado, my doctor initiated a treatment regimen since there was evidence of progression of the Chronic Beryllium Disease (CBD).  I'm going to outline the drugs and dosages here.  Side effects will be my next post.

You've probably seen the commercial on TV about an inhaled drug called Symbicort.  It's the one where the father talks about his COPD and not being able to go fly fishing with his son anymore.  After Symbicort he is back on the river fly fishing with his son and grandson.  I can't fly fish and I don't have COPD, but I am on Symbicort now and a myriad of other drugs.

The preferred drug for the treatment of CBD is Methotrexate.  It comes in 2.5 mg. tablets.  My dosage instructions for Methotrexate are:

• Take 3 Tablets weekly for two weeks (all on Saturday)
• Take 4 Tablets weekly for two weeks (all on Saturday)
• Take 5 Tablets weekly for two weeks (all on Saturday)
• Take 6 Tablets weekly for six months (all on Saturday) 

I was told that Methotrexate takes six months to actually kick in and start working the way it is supposed to to as the doctor said, "Maintain and reverse the lung damage that is reversible."  Basically the goal is to stop the progression of the scar tissue in the lungs.  Because of the time lag, Prednisone is prescribed in conjunction with the Methotrexate to speed up the process of reversal and stopping progression.

My dosage instructions for Prednisone (5 mg. tablets) are:

• Take 4 tablets daily for one month
• Take 3 tablets daily for one month
• Take 2 tablets daily for one month
• Take 1 1/2 tablets daily for one month
• Take 1 tablet daily for one month
• Stop

I was also told to take a 1 mg. tablet of Folic Acid daily.  Apparently both drugs can cause Folic Acid deficiencies. 

Finally, I was given instructions for the use of a Symbicort 160/4.5 inhaler.

The prescribed dosage for Symbicort is:

• Two puffs twice daily.  The puffs are inhaled deeply after a long exhalation and held for 10 seconds.  I typically do this upon waking and then before bed.  The inhalation of two puffs are followed by a gargle with antiseptic mouthwash to prevent thrush (yeast growth in the mouth).  I know TMI!  

One thing I should tell you about myself is that I always follow doctors orders.  Always.  Maybe its because I became used to following orders in the Army, but I follow orders.  I was anxious about starting this regimen, especially with the potential for side effects, but I do it all religiously.  I'll tell you how its going soon.

For more information on the drugs, here are some links if you are so inclined.

Methotrexate:  http://www.drugs.com/methotrexate.html
Prednisone:  http://www.drugs.com/prednisone.html
Folic Acid: http://www.drugs.com/folic_acid.html
Symbicort:  http://www.mysymbicort.com/default.aspx

Back in Denver September 2013 -- Progress or Progression?

So a year ago in September 2012, my physician at National Jewish Health decided that we would take a "wait and see approach" relative to treatment of my Chronic Beryllium Disease (CBD).  Since 50+ years had passed since the exposure to Beryllium and my developing symptoms, that made perfect sense.  In September 2013 I traveled back to Denver for an annual follow up visit.  The same tests would be performed, except for a lung biopsy.

The tests repeated were a chest X ray, pulmonary function tests and the exercise tolerance test along with associated arterial blood draws. The consultation with my assigned physician gave me the following information:

1. Apparently in the past year, the pulmonary function test equipment had been upgraded to newer models.  The doctor advised me that the newer equipment was showing patients a result that was 5% better than the previous equipment.  My results stayed the same so that meant that there was a large possibility that my actual results were not as good as the prior year.
2. The exercise tolerance test with arterial blood draws, showed that I became fatigued quicker and as a result did not max out at the same heart rate that I was able to perform at the previous year.
3. In comparing the new chest X ray to the prior years X ray, the doctor displayed an overlay of the new and the old.  It was clearly evident that more scar tissue had formed on the lungs in the twelve months since my last visit.  The CBD was clearly progressing.  (See pictures below -- more cloudiness is evident)

September 2012

September 2013

With the evidence of progression of CBD in my lungs, the doctor suggested that it was time to treat me with proven therapies that have helped others with my condition.  He told me that, "this wasn't a death sentence or life threatening" and that the "majority of people treated, responded to treatment favorably."  The catch is that the drugs usually prescribed have many side effects.  A lot of side effects.

I am relieved and willing to try them to improve my energy levels and hang onto the quality of life that I have grown fond of.  I say, "Give me the drugs."  My wife says that I am always a good patient and do what the doctor tells me to do."  She's right, I follow doctor's orders strictly.  This will be no problem for me.  I'll share more about treatment in the next post.