MAW PPP January 28 2013

In my 30 years with Crohn’s Disease, I am asked more about taking these “Biologic” drugs than any other aspect of the disease. I imagine that’s a good sign because it means the conversation is turning towards potentially successful treatments and possible remission BUT with these advancements comes risks in the form of potential extreme Side Effects. That said, I created this Video as an informative, realistic & positive account of the effects & efficacy of Remicade, Humira and Cimzia in treating Crohn’s Disease.

How the Video is Organized

The Video is organized as follows:

 1.       What are Biologics?

2.       The Science behind Biologics.

3.       What are the specific Biologic Drugs used for Crohn’s Disease?

4.       When are Biologics used to treat Crohn’s Disease?

5.       How are Biologics administered (and how quickly do they work)?

6.       What are the Side Effects of Biologics?

7.       Biologics Side Effects vs. Biologics Efficacy?

 My Current Plight with Biologics Side Effects

For those interested in my current plight with Side Effects from having taken Remicade, Humira and Cimzia (although I was on Humira the longest period of time), I developed a rare Lung Disorder which manifests itself as severe Shortness of Breath coupled with intermittent “Fever Attacks” of 105.  It first started in 2011 and then it was diagnosed as the rare lung disorder, “BOOP,” i.e., Bronchiolitis Obliterans Organizing Pneumonia.  The initial Treatment Plan was 60 mgs of Prednisone for ONE (1) YEAR but my body did not respond and I wound up having success with the Chemotherapy drug, Cytoxan. 

After a few months of Cytoxan in 2001, I thought I was done with BOOP but it appeared to return in early 2013.  However, despite having the same symptoms, a recent surgical lung biopsy revealed my lung tissue was “dying” but the Pathology Departments of several hospitals, including that of The Mayo Clinic, were stumped as to the reason.  Thankfully, I have a smart and proactive Pulmonologist who, in consultation with my longtime Crohn’s Disease Gastroenterologist, is starting me on Cytoxan while they prepare a submission of my Medical Case to the “National Jewish Health Center” in Denver, Colorado, as it is rated the top Respiratory Hospital in the United States.

 But am I truly suffering from Biologics Side Effects?

No medical professional will say for sure whether my lung problem is due to my experience with the Biologics in treating my Crohn’s Disease.  But logic and medical wisdom seem to be pointing in that direction.  After all, when experienced pathologists come across what they label as extensive “necrotizing granulomatous inflammation” in both lungs yet they cannot explain why, it would seem the latest rather potent Crohn’s Disease “miracle drugs” have something to do with my respiratory problems especially since it is respiratory problems which dominate the serious and numerous Humira Side Effects listed on the drug’s container box as required by several “FDA black box warnings.”

 Many Crohn’s Disease patients have no choice

My problems with Humira notwithstanding, I can’t ever forget that I took the drug when I was out of options and Biologics offered me HOPE.  I had exhausted all conventional drug treatments and the mere chance that Humira or Cimzia could get me back some quality of life made my decision to take Biologics a no-brainer.  For a few years it actually worked and with the exception of occasional severe joint pain, it would be fair to say my Crohn’s Disease was in Remission because of Humira and/or Cimzia.  But then routine bouts of Bronchitis turned into frequent hospitalizations and Pneumonia was right around the corner.  Even though various Social Media postings clued me into the connection between Biologics and Respiratory Problems such that I discontinued the Biologics, the cumulative amount of Biologics in my body must have been too much as a 2011 CT Scan of my lungs prompted a Thoracic Surgeon to warn me that I should be prepared for a diagnosis of Lung Cancer after he soon performed an emergency surgical biopsy of my lungs.  He even deemed it an “emergency” biopsy because he feared I might soon lose the ability to breathe on my own and that would make performing the biopsy much more complicated. 

 The price & reward of “Hope”

Perhaps HOPE came at too high a price for ME but that is not the case for MANY Crohn’s Disease patients who suffer NO SIDE EFFECTS.  In that regard, I wish them well when they are faced with this same decision and I am truly optimistic about future NEW Crohn’s drug treatments, Biologics or otherwise, because I think Researchers and Scientists have learned a great deal from patients like me who took Biologics.  To that end, if my struggles help even one child battling Crohn’s Disease who has exhausted the conventional drug treatments, then I submit this Blog Post with a HUGE SMILE.  🙂  

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