Saniona is a Danish-based pharmaceutical company which has recently issued a press release about some exciting news for HO sufferers: the results from their phase 2 study are promising! I have recently had the pleasure to interview Rami Levin, the CEO of Saniona and he and I spoke about the promising and exciting new developments with their new drug for hypothalamic obesity, Tesomet.
If and when the FDA approves the next phase of study, it will be a multi-site study taking place in the United States.
Please click here for the podcast interview of Rami Levin.
For Saniona's Power Point presentation on Tesomet's phase 2 trial for HO, please click here.
Monday, May 4, 2020
Friday, January 31, 2020
127) Long overdue update on Sasha and updates on literature and providers
It's been a long while since I've updated the blog or made an update about Sasha. In short, he is doing well. To date, Sasha has been using oxytocin for just about 3.5 years. He continues to use 6 iu/day intranasal oxytocin and 50 mg/day naltrexone. He is holding steady with his eating behaviors. Although he tolerates carbohydrates well and eats a moderate amount of complex carbs (whole grains, starchy vegetables, pasta) in his diet, he avoids sugar because sugary foods do seem to incite an addictive process in him. It's hard to know if this is due to hedonic hunger common to survivors of craniopharyngioma who develop hypothalamic obesity and hyperphagia, OR if it is the ordinary (addictive) reaction that many people experience after ingesting sugary foods. In any case, we know that Sasha has a much easier time managing his hunger if he avoids eating sweets. When he does eat sweets, he begins to crave more sweets. Without eating sugary foods, Sasha can still enjoy a variety of foods and does not feel deprived. His BMI is stable (height is 6'1", weight is 168 pounds).
As far as his lifestyle and quality of life: although he doesn't play sports, he keeps reasonably active as the physical education aide for an adaptive PE class, takes walks in the neighborhood, goes to the gym and on a lot of trail hikes on the weekends. Since I have last posted about him, he turned 17 and has a part-time job as a child care worker in an after school program for elementary school-aged kids. For fun, he enjoys playing Magic-the-Gathering and plays guitar in a rock band.
By the way, I've (finally) updated the research literature on oxytocin in the blog for those of you who are interested in collecting relevant research articles to learn more about oxytocin or to share with your physicians.
I know that in the last several months since I've last written in the blog, more people have been able to get their physicians to prescribe oxytocin. I'm always eager to hear about people's experiences and happy to answer questions. This blog is shared with many different Facebook groups so please feel free to share your experiences and ask the questions in the blog so that others may see the questions and the answers.
If you know of a provider who is willing to prescribe and willing to be listed in the blog’s provider directory please share the names of your oxytocin-prescribing physician, their location (city, state, country), and specialty (pedi, adult, endocrinology, family medicine, etc) and I will list the info in the blog so others can also find willing prescribers. Thank you!
As far as his lifestyle and quality of life: although he doesn't play sports, he keeps reasonably active as the physical education aide for an adaptive PE class, takes walks in the neighborhood, goes to the gym and on a lot of trail hikes on the weekends. Since I have last posted about him, he turned 17 and has a part-time job as a child care worker in an after school program for elementary school-aged kids. For fun, he enjoys playing Magic-the-Gathering and plays guitar in a rock band.
By the way, I've (finally) updated the research literature on oxytocin in the blog for those of you who are interested in collecting relevant research articles to learn more about oxytocin or to share with your physicians.
I know that in the last several months since I've last written in the blog, more people have been able to get their physicians to prescribe oxytocin. I'm always eager to hear about people's experiences and happy to answer questions. This blog is shared with many different Facebook groups so please feel free to share your experiences and ask the questions in the blog so that others may see the questions and the answers.
If you know of a provider who is willing to prescribe and willing to be listed in the blog’s provider directory please share the names of your oxytocin-prescribing physician, their location (city, state, country), and specialty (pedi, adult, endocrinology, family medicine, etc) and I will list the info in the blog so others can also find willing prescribers. Thank you!
Subscribe to:
Posts (Atom)