Partnership with Patients Summit & “Humira” position

Thanks to being awarded a “Travel Scholarship” from the Society for Participatory Medicine based on my contributions to the world of Health Care Social Media, I will be attending the “Partnership with Patients Summit” in Kansas City, Missouri from Friday, Sept 21, 2012 through Sunday, September 23, 2012.  I am honored and humbled by receiving such an Award and I look forward to sharing all that I see and hear by reporting about it on my Blog upon my return.  I intend to bring my Flip HD Camera and trusted Tripod so that I can record daily summaries of the day’s events.

On an unrelated note, yesterday I recorded a One (1) minute Video entitled: “The Drug “Humira” – Miracle Drug or Snake Oil?” utilizing the new wonderful technology from “Vsnap.com.”  Several people presently taking Humira, and getting great results with it, seemed to take offense at my characterization of Humira as “Snake Oil” or as an ineffective drug for Crohn’s Disease.  Granted, the title of the video is rather “dramatic,” but the content of the video is simply MY opinion based on MY experiences and on the experiences of MANY Crohn’s Patients who have sought me out to commiserate.

MY issues with Humira are numerous, especially in light of the drug being approved last week by The European Union for treatment of Severe Crohn’s Disease.  For the purposes of simplicity, I am listing some of them below.  That said, I acknowledge that Humira DOES WORK in treating Crohn’s Disease BUT I am concerned that longer term use of the drug (such as in MY case) will reveal many more negative outcomes and dangerous side effects than are reflected in the sample sizes for which Abbott Laboratories, the manufacturer of Humira, received global approval.

As I was one of the early patients taking Anti-TNF Agent drugs who had to quickly “graduate” from Remicade to Humira and then to Cimzia, I am concerned that the almost fatal (and often on-going) side effects I experienced might occur more frequently than first thought, particularly as these drugs are taken by patients for longer periods of time.  Accordingly, please understand that I write and record about this Humira issue because I want to keep Researchers and Pharmaceutical Companies on their toes, as the pressing need of patients doesn’t always align up with the profit-motives of Pharmaceutical Companies.  Moreover, I feel compelled to speak out due to the misleading Humira television commercials Abbott Laboratories targets at a captive patient audience desperate to get their lives back from these formidable autoimmune diseases.  Some would say I am a cynic but others would conclude I am trying to be realistic.  Regardless, please trust that, in the immortal words of Singer/Songwriter Elvis Costello, “My Aim is True.”

  1. How could ONE (1) Drug such as Humira claim to be “THE” effective Treatment drug in SIX (6) Different autoimmune serious diseases such as:  Moderate to Severe Rheumatoid Arthritis; Moderate to Severe Chronic Plaque Psoriasis; Moderate to Severe Crohn’s Disease; Ankylosing Spondylitis; Psoriatic Arthritis; and Moderate to Severe Polyarticular Juvenile Idiopathic Arthritis ?
  2. The drug is marketed in the United States to patients via television commercials which focus on “regaining back a certain lifestyle” very much like the manner in which “Erectile Dysfunction” drugs are marketed.  The very serious medical disclaimers are read aloud in a quick and monotone fashion, which I imagine is legally sufficient, but I contend is morally INSUFFICIENT because the commercial then focuses the patient’s eye on the VIDEO “wants” of patients (myself included) instead of the patient’s NEEDS.  Given the increasing number of ineffective usages of Humira (I am extrapolating based on the overall increasing number of patients using Humira) and the severity of the side effect cases, shouldn’t these television advertisements be regulated more carefully so that they better represent the risks associated with taking Humira?
  3. Why is Humira advertised DIRECTLY to patients?  As a Crohn’s Disease patient with NO CHOICE, having run out of drugs to take to treat my Crohn’s and keep me out of the hospital, and thus desperate for a cure or even a treatment that gives me back some semblance of a normal lifestyle, an argument can be made that Abbott Laboratories, the manufacturers of Humira, are manipulating a captive audience.   When you go and ask your doctor to put you on Humira based on seeing these television commercials, it is likely you won’t “hear” the medical disclaimers being carefully told to you by your doctor because all you can “see” is your old “active self” doing the things you love, when you want to do them.  I have a problem with this type of manipulation when the outcome “COULD” be the exact opposite or even worse.
  4. Since Humira DOES WORK in MANY CROHN’S DISEASE CASES, it pains me to write about these issues and in doing so possibly dashing the hopes of these hopeful patients, but someone needs to speak out because I know MANY Crohn’s Disease doctors who are very frustrated and disappointed with both the long-term success of these Anti-TNF Agent drugs and their intense and pervasive side effects.  As for the patients taking Humira now, or considering doing so because they have no choice, they should simply view my comments as a Cautionary Tale; nothing more; nothing less.  But because Crohn’s Disease is not a “sexy” disease, I am so worried that research money will not be adequate to proceed further and therefore patients will have to settle for treatment drugs based on Anti-TNF Agent ideology.  I hope my fellow Crohn’s Disease patients understand my intentions in this regard.

What Happened to Me b/c of Humira

If you’ve read my Blog or followed me on Twitter, you are probably familiar with what happened to me after taking Humira and Cimzia for a significant period of time.  In short, they worked for a while but then I developed severe Respiratory and severe Joint Pain side effects which forced me to stop taking them.  A few months later I began to come down with intermittent fevers of 105 often accompanied by Bronchitis or Pneumonia.  Eventually, I became so sick that I had to be hospitalized for what the doctors then thought was drug-resistant Pneumonia.  After several hospitalizations, I developed the additional symptom of severe Shortness of Breath and that prompted a CT Scan. The CT Scan showed accumulated severe damage to my lungs which the Thoracic Surgeon thought was consistent with Lung Cancer even though I have been a non-smoker my entire life of 49 years.  They performed a surgical biopsy because they wanted to obtain samples of my lung while “I was still able to breathe on my own,” that’s how grave a situation they thought I was in.  Thankfully, I did not have Lung Cancer but instead had an often fatal Lung Condition called Bronchiolitis Obliterans with Organizing Pneumonia or “BOOP.”

My Crohn’s doctors recognized the connection of the BOOP to the Anti-TNF Agent drugs Humira and Cimzia and I began treatment for the BOOP with 60 mgs of Prednisone daily with the intent to eventually taper down over the course of ONE (1) year.  That is the standard, and ONLY successful, treatment for BOOP.  However, after 4 months or so, I still had severe shortness of breath and had gained 55 pounds.  My Crohn’s doctor discontinued the Prednisone and, after consulting with several other doctors, put me on the Chemotherapy drug, Cytoxan.  The Cytoxan worked on the BOOP after a few monthly infusions but then my Crohn’s Disease started to act up after being in remission for several years.  A few months later my Crohn’s became so active I was forced to have my 20th extensive intestional surgery to address it.  I was in the hospital for 17 days and in addition to the Crohn’s surgery, I had to deal with several other SERIOUS complications from the treatment for BOOP, which resulted from the Anti-TNF Agent drugs (e.g. Heart and Testosterone issues).

Since taking the Anti-TNF Agent drugs, I’ve also noticed that run-of-the-mill Seasonal Allergies seem to trigger such an exaggerated immune system response that they CRIPPLE ME.  That might sound strange emanating from typical  watery eyes, sinus pain and the sniffles but I get so lethargic it is as if I’m in the 14th round of a 15th round Boxing Match with boxing legend Mike Tyson and I am doing all I can just to stand on my two (2) feet.  Additionally, this lethargic feeling is often accompanied by Migraine Headaches so severe I can’t move an inch once I find a spot in the bedroom where I achieve total darkness and quiet.  I experienced much less severe versions of these symptoms once I was diagnosed with Crohn’s Disease but after I began taking Remicade, Humira and then Cimzia, these unpredictable “episodes” became appreciably worse and ultimately, Disabling.

Again, mine is a cautionary tale but I’m not that lucky or unlucky to be that 1 in 10,000 or so patients who gets BOOP from Humira.  I have had Crohn’s Disease for almost 30 years and I can honestly say that my illness is MUCH MORE PERVASIVE since taking the Anti-TNF Agent drugs.  It’s as if I made a deal with the devil to get Five (5) good years at the expense of a lifetime of bizarre, painful, disabling and increasingly serious and expensive side effects.  There you have it.  I hope you do GREAT on Humira.  But if you run into problems, please feel free to contact me, after 1st contacting your doctor. Good health to all.

3 responses to “Partnership with Patients Summit & “Humira” position

  1. I was on Humira from Nov.2012 to April 2013 for psoriasis. My last dose was the end of April. Between March 2013- Oct. 2013. I have been hospitalized 9 time for respiratory distress. One of those events I was on a ventilator for 6 days. I also contracted Legionella Pneumonia in July 2013. My lung doctor thinks Humira is the cause. I am still having symptoms as far as respiratory issues. Lots of wheezing, shortness of breath, flu like symptoms, etc. I am going to some of the best doctors in Dallas but they cannot pin point what is going on. They have no answers and supposedly the humira takes 6 weeks to leave your system. How do I live like this. I am a single mother and have to work…Any advice on what to do now?

  2. Irene Fountain

    My son was diagnosed with Crohn’s about 3 months ago. He’s trying Entocort now but the doctor might want to put him on Humira. He’s 28. He and I are scared to death of what we’ve read about Humira and other TNF drugs. He doesn’t want to die of cancer (I read that the probability of developing an “often fatal” type of cancer is 300% greater than in the general population). What the heck do we do? Take it and take a chance? Try it short term? Not take it at all?

  3. I had my eighth colonoscopy three weeks ago. (every two years) Have been on Asacal, but this last Colonoscopy the Gastro Doc says I am 100 % worse and need Humira. I have resisted for the last two years, having only two minor flares. I don’t have pain, have soft serve icecream stool about twice a day and maybe a brown water stool once a week. Reading your blog and the other site where everyone loses their hair, have migraines, rashes, fistula’s, skin cancer, respiratory problems scares the Heck out of me. I am weeping.. I work as a nurse and function very well, just having to hop skip and jump to the bathroom once in awhile.

    So sad right now . Go see my Gastro Doc on the 27th… :

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