Alopecia-Long Term Sufferers; Do you find studies exclude you?

Hi Good Positive People:)

Have you found that when you apply for studies on Alopecia of any kind, Areata, Totalis, and Universalis that if you've had the disorder for more than 5 years they exclude you from the study?  It almost makes me feel hopeless and like me having to live like this doesn't impact me or my life.  Why do they do this?

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Permalink Reply by dreamscometrue on July 13, 2018 at 3:49pm

I was taking MTX for over 7 months before I started on Humira.  The injections, honestly you dont even feel it because the needle on the pen is so small, you'll question whether you did it right before you say it hurts; you dont feel anything especially if you take the pen out to warm up, you feel absolutely nothing.  Humira may work better for you because the pathways for biologics for each disease is different, its really a matter of which one works best for your disease

Permalink Reply by Moonbeam on July 16, 2018 at 12:52pm
I got distracted and didn't address your original post. :) Yes, I've found studies exclude us based on the duration of the disease. I tried to get into the Pfizer study. Nope. Not gunna happen. I DID get into the Concert Pharmaceuticals study (but didn't last long and am no longer in it). Primarily, it is almost impossible for an alopecian to get into a study with greater than 5-7 years of disease duration. Why? My guess is that at the early, phase 2 trials, drug companies try to be as successful as possible so that they can make it to phase 3 and beyond. When it comes down to it, drug companies are profit-driven, and past studies show that individuals with AU, with a longer disease duration, respond less successfully to treatments. That's why I think this is happening. Even if the lead investigator of the trial is doing the study and developing the drug because they have sincere empathy and care for those with alopecia, they still have to work within the profit-driven system of the pharmaceutical industry.

If the clinical trials are successful then eventually us long-term folks will be able to try those drugs. On the plus side, I suppose it's safer for us. However, some of us wouldn't mind joining a trial and do not have the choice to do so. It makes me feel hopeless, as well. For me, living with AU is worse than living with the arthritis and psoriasis because it changed my appearance so completely, and so drastically! My identity was in tatters for all of my 20s (as was my love life, since I didn't trust anyone to see past the disease). I dropped swimming, because I didn't want people to see me that way. I care a little less about all of this now that I'm in my 30s and married, but I don't go to work or out without hair. I tried that and the staring and fear in peoples eyes (Was I contagious? Was I dying?) was too much for me to take.

Yes, alopecia has an immense psychological impact on our lives. It should be taken very seriously.

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