Kiacta in Sarcoidosis - Forum

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The forum is the space where TLS users get to comment on the protocol design process. Feel free to draw attention to certain aspects of the Protocol Builder or what you've noticed in the Protocol Builder results. And of course, you can talk to each other!

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December 7 2014 at 12:49pm
I think I would like a treatment that would give me a better quality of life. Currently, I am not even 20% of who I was before having this disease. I would have liked to be closer to who I was, and what I was capable of doing before being so ill.
November 28 2014 at 11:47pm
The study design really needs to be designed so that it does not invoke any use of steroids. Whenever studies evaluate new drugs by including steroids in the protocol, the steroids tend to mask any benefit that the study drug might provide.

It would be really interesting to see what the study would do for someone like me, who had more or less stable disease for more than 20 years, but who has never been treated.

Such a study must therefore be designed around patients with less severe disease who are not in immediate need of treatment (with steroids). The patients are then followed for some length of time to see how many get better on the trial drug, compared to how many deteriorate and need treatment with steroids.
November 15 2014 at 1:44am
I think I would like a treatment that would give me a better quality of life. Currently, I am not even 20% of who I was before having this disease. I would have liked to be closer to who I was, and what I was capable of doing before being so ill.
sarky responded
November 22 2014 at 8:23am
"Quality of Life" is a phrase I hear constantly, but have no sense of just what it means. What do you mean when you say it?
October 22 2014 at 6:04pm
There are a wide (vast) variety of symptoms Sarcoid patients report when I (we) have a flare-up. Sometimes the symptoms are vague and subjective. For example, we report severe fatigue that is subjective.
Develop a comprehensive list of symptoms and treatments for Sarcoid patients.