Trial offered for LASN (phase 2) and Linsitinib (phase 2b)
Hi,
TED patient UK here, moderate-severe case, eyes already impacted by high astigmatism and short sightedness (L -22, R -15). Diagnosed with hyperthyroidism in Feb, on Carbimazole for over 5wks,.and finally seen an eye/thyroid-eye-disease specialist yesterday. Been told, the conventional way won't bring my bulging eyes back to normal and I could qualify for Randomized, Double-Mask, Placebo-Controlled, Study. There are 2 in question, LASN which is IV and Linsitinib orally, each with different dosages both spanning over at least 6 months with regular check ups etc. Side effects seem to be more extensive with tablets.
I have 2 kids, 3 and 7, about to change jobs.
I don't know how to decide at this moment but have to make up my mind soon as one of the trials will start end of this month, meant to speak to the specialist this Friday. The professional she is, she won't make any recommendation and it's all on me, she did say I have to consider lifestyle as in, whether I will be able to attend all appointments.
I was hoping to get some feedback here... yes, TED bothers me immensely as a contact lens wearer and make up lover.🙁 the double vision is not impacting me as much yet, probably because my left eye vision is so weak.
Thank you in advance for taking your time to read my post.
Hi there
, deciding to participate in any type of new trial or treatment is definitely complicated! It is such a personal decision but these articles might be helpful to you: https://thyroideyedisease.net/clinical/understanding and https://thyroideyedisease.net/clinical/participation. All the best, Sam S. (TED team). I'm currently undergoing a 3-week trial of Linsitinib. The entire treatment cycle is expected to last 6 months, with an additional six months if I'm confirmed for further treatment. I haven't noticed any significant improvements, but thankfully, I haven't experienced any noticeable side effects affecting my daily life either.
I have an upcoming eye exam toward the end of this month, and I'm hopeful for positive news despite feeling like my eyes might be more protruding. I'll be sure to keep you updated if you're interested.
Hi @elena lavanna, Thank-you for your feedback, glad to hear you're doing OK during this trial, i have decided to try LASN and had my first iv yesterday, so, too early to say anything... fingers crossed, we will both see improvements!
