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.
December 1 2014 at 5:11pm
What are the side effects? Sometimes the treatments cause more harm than the disease.
December 1 2014 at 5:09pm
I have had lung involvement, neuro sarcoid, skin nodules and now in my airways. Most people who have the chronic form of this disease, get it in multiple places. I do hope this study will address sarcoid no matter where it appears.
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?
November 14 2014 at 4:07am
Because this is such a diverse disease that can strike anywhere in your body the symptoms and diagnostic testing can be confusing. The treatments are things designed for other diseases that somewhat lessen the impact but have serious side effects. There is not much knowledge by primary care providers or patients as to what the disease will and can do and what to do about it. For example I recently learned that the calcium leeching effects of sarcoidosis can cause brittle teeth with a predominance of breaking off at the gum line. I suffer from this problem. I asked in a support group if anyone else did and got 25 positive responses and none of them knew it could be caused by the disease. We need more and better information. We need one or two diagnostic tests that can accurately measure the extent of active disease. Finally we need a treatment with fewer serious side effects than the steroids and antirheumatoid medications currently used.
November 14 2014 at 1:16am
Could chart with flometer.
November 14 2014 at 1:14am
Pulmonary function can vary due to temp,dust,chemical and even once in a store spices.Hard to avoid everything.Its easy to stress breathing at work and certain situtations encounterd out and about.Frustrating.
November 13 2014 at 11:17pm
Why not study patients who have multiple Sarcoidosis, such as Neuro, pulmonary and cardio?
WendySG responded
November 14 2014 at 10:54pm
Ny concern as well, previously I had more lung involvement, now my primary issue is muscle/nerve.
October 22 2014 at 6:16pm
I would like to see data that reflects both my individual results compared to the overall data.
October 22 2014 at 6:15pm
I am an advocate for telemedicine. I know of devices that can check vital signs. I feel something that can check and report pulmonary status, e.g. remote spirometry, would be recommended.
October 22 2014 at 6:13pm
My only concern is something that may worsen my condition.
October 22 2014 at 6:12pm
Yes I am willing to participate.
October 22 2014 at 6:11pm
If possible, is there a way to measure an increase in the length of time between flare-ups?
October 22 2014 at 6:10pm
I agree with the proposed endpoint. Having an FEV1 of only 53%, I would love improvement.
October 22 2014 at 6:08pm
I should have read the question better. What experiences have I had as a patient? I often feel like I’m crazy. Some of the symptoms do not meet the expectation of the medical providers. When I report breathing difficulties, they rely solely on the Pulmonary Function Tests. Even though my PFTs are basically static, breathing difficulty has increased.
sarky responded
November 22 2014 at 8:22am
Oh my; can I ever relate to your comment! It seems that no matter what level and/or location of severe distress I describe to a Physician, their response is to take my vitals, my temperature, my blah blah blah--ad nauseum. I am sooooo tired of hearing, "Well, your vitals look fine. Let me take a listen. Just breathe normally...uh-huh...well, I don’t hear anything abnormal blah blah blah..." How do we get across to our Doctors what WE mean, when we say that it is abnormally uncomfortable to...breathe, or stand in one place for hours, or keep our thoughts from playing hide and seek with us, or focus on any one thing for extensive periods of time, or, dot dot dot. What do we do to fix this??
October 22 2014 at 6:05pm
I would recommend having all patients with confirmed sarcoidosis particiate.
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.