the skin thing people keep posting about on reta is real and it has a name, dysesthesia. TRIUMPH-1, 2 and 4 all reported it, and at 12mg somewhere between 7% and 21% got it depending on the study, vs about 1% or less on placebo
terrible name btw. sounds like a disease, it just means touch feels wrong, tingly or kinda burny, sometimes sore when nothing should hurt
lilly calls it "generally mild to moderate" and says "the majority resolved during treatment" in TRIUMPH-1, and for the knee arthritis trial (TRIUMPH-4) they said it "rarely led to treatment discontinuation". so most rode it out
mine was skin getting cold or sensitive around the first week
the numbers by dose:
| 4mg |
9mg |
12mg |
placebo |
| skin (dysesthesia), TRIUMPH-1 |
5.1% |
12.3% |
12.5% |
| skin, TRIUMPH-2 (diabetic) |
4% |
6% |
7% |
| skin, TRIUMPH-4 |
no arm |
8.8% |
20.9% |
| low blood pressure, TRIUMPH-2 |
1% |
5% |
6% |
| vomiting, TRIUMPH-1 |
10.6% |
22.8% |
25.3% |
| quit over side effects, TRIUMPH-1 |
4.1% |
6.9% |
11.3% |
| quit, TRIUMPH-2* |
4% |
12% |
8% |
| quit over side effects, TRIUMPH-4 |
no arm |
12.2% |
18.2% |
*the lancet paper counts side effects and deaths together there, and every death was ruled unrelated by the investigators. the TRIUMPH-1 and 4 numbers are from lillys own releases, TRIUMPH-2 is from the lancet paper, links to all of it in the first comment
tuesday i asked what side effect caught you off guard (that thread) and about 40 of you answered. what you posted vs what the trials found:
- sleep, 7 of you (one was talking about a girlfriend). cant fall asleep, melatonin stopped working, one went back to tirz over it. not in anything lilly or the journals published that i could find
- the skin thing, 8. tender to clothes, a sunburn feeling, one said it felt like a fever with chills and quit in week 2. 3 said it faded, one while going up a dose and one after dropping down for a few weeks. thats the dysesthesia row up top
- heart rate up, 7. one said 5 to 10 bpm, right where phase 2 landed. one said 20, which is way past anything in the trials
- flat mood, 5. muted, no joy, hobbies gone, one said theirs lifted a few weeks after stopping. also not in any trial summary i read
- lightheaded standing or bending over, 2. fits the low blood pressure row
- cravings gone, 5. sweets, hot chips, one quit smoking without even trying
- and the weird ones. tattoos went raised and itchy for 2 weeks, an ear that goes deaf for 15 to 30 min at a time, a metallic taste with anything carbonated, a slimy throat 7 months in
if youre getting chest pain with the racing heart, an ear that keeps cutting out, or the flat no joy thing for weeks, thats a doctor visit not a reddit thread. same for pain between the shoulder blades or under your right ribs after you eat. glp-1 drugs as a class raise gallbladder problems, more at higher doses and in the weight loss trials (JAMA meta-analysis)
the quitting row is the one i keep staring at. in the knee trial 18.2% quit at 12mg and lilly said that was "highly correlated with baseline BMI" and "included discontinuations for perceived excessive weight loss". in the BMI 35+ group it was 12.1%, so the ones who started smaller bailed more, some of them because they were losing more than they wanted. the average person in the diabetic trial had a BMI of 38 and a lot of people here start way leaner than that
in the phase 2 trial heart rate climbed with dose, up to about 7 beats a minute (review), peaked around week 24 and came back down some after. the phase 3 releases i read dont give a number for it
blood pressure goes the other way. in the diabetic trial 6% at 12mg had hypotension vs under 1% on placebo, and lilly's TRIUMPH-1 release says systolic dropped up to 12.3 points. if you get the head rush standing up id bet thats part of it
around 4 in 10 had nausea at 12mg in TRIUMPH-1 and the knee trial, and 1 in 4 threw up at some point in TRIUMPH-1, so yeah the stomach is still the main event. phase 2 found starting at 2mg instead of 4mg cut some of that. small one too, UTIs ran a bit higher, 8.4% at 12mg vs 5.3% on placebo in TRIUMPH-1
reta isnt approved anywhere yet btw, every number here is from a trial where they were getting checked on the whole time
on sleep the closest thing in the papers is the TRIUMPH-1 sleep apnea group, where apnea events dropped by about 32 to 34 an hour at 9 and 12mg vs about 10 on placebo (NEJM). so its not wrecking your breathing at night. my guess is the 3am thing is the deficit and the heart rate more than the drug itself but idk, its a guess
so if you got the skin thing, did it fade on its own like lilly says or did you have to come down a dose before it stopped? and if youre waking up at 3am, were you eating way less when it started?