u/Flimsy-Pie-6295

PCS & GLP-1s: My experience so far

I have an autoimmune issue, am in perimenopause, and am 2 years out from a concussion I can't quite get to 100% recovery on.

With all those things has come with 40 pounds weight gain over the last 4 years. Since my concussion I have really been dealing with some crazy total body inflammation (hands and feet going numb, puffy face, joint pain) in addition to the brain fog (which also could be perimenopause). To compound things, even though I'm an athlete, my metabolism is pretty crap and my TDEE and calorie deficit is quite a bit lower than you'd expect. However, since my concussion my body absolutely does not like a calorie deficit and my symptoms with go totally insane.

The research is pretty strong with the anti-inflammatory benefits of GLP-1s, but I was still really hesitant to try them because I knew there was no way my body would tolerate eating 1000 calories a day like some people report. Nor did I want INCREASED fatigue which everyone talks about.

However, between the research with migraine prevention and additional research indicating some people have a neural inflammation benefit, two weeks ago on a morning I could not bend over to pick something up after my bike ride due to pain, I decided to cave.

Because I am sensitive to meds and my insurance won't cover this, I decided to go with a compounding pharmacy that does a flex dose schedule of 1.2mg, 2 times a week with no additives (I didn't want any other vitamins to add an additional variable).

Within 24 hours I had a significant reduction in brain fog, overstimulation, joint pain, and inflammation. The difference in my face alone is staggering and I have had multiple people comment on it. I have had zero GI side effects. My energy is quite literally through the roof (which has led to some insomnia, which is a bummer but I'll take it at this point).

Interestingly, I have had an appetite INCREASE. Since I am effectively doing a microdose, I was not expecting to have appetite suppression, but I was not expecting to get more hungry. I purposely kept my diet exactly the same as it had been the couple weeks before starting (slight calorie deficient so I am in the 1400-1500 calorie range a day and am more relaxed on the weekend without going insane). This week, by last night my body was seriously rebelling about the hunger levels and my headaches and PCS symptoms were flaring so I ate a large, healthy carb forward dinner. I am currently almost 8 pounds down, which is undoubtedly almost all water weight.

I am mind blown at what this drug has done to me the last two weeks and angry I didn't try it sooner. I realize everyone's experiences with it will be different, but my journey so far has been absolutely wild and I literally feel like a new person.

reddit.com
u/Flimsy-Pie-6295 — 6 days ago

I have posted a fair bit about starting this journey and appreciate all the advice so far. Background of autoimmune issues, hormonal issues, etc.

About 10 days ago I started a flex dose of 1.2mg every 4 days. I have no appetite suppression or reduction in food noise, which is OK because that was not my issue. I have for some time pretty consistent of "on average" consuming 1400-1500 calories a day with some higher or lower days in there. I have purposely kept my diet exactly the same since then (actually it's been worse as 2 days out of those 10 I was out of town and eating more poorly than average).

HOWEVER, I am down 6 pounds. This is obviously primarily water/inflammation weight and I feel a million pounds "lighter." One of the biggest driving factors of wanting to try a GLP-1 is actually to improve my inflammation and metabolism so I can actually consume MORE so I can properly fuel instead of being in an on-paper calorie deficit forever while seeing the scale go up.

I am working with a dietitian, but I'd also like athlete suggestions. When did you pull the plug on the rapid weight loss and start eating more to fuel better and work out more effectively? As much as I am loving this and frankly in awe of what is happening (holy cow, the amount of mobility I've gotten back the last week and a half is unhinged), I also want to be careful.

reddit.com
u/Flimsy-Pie-6295 — 8 days ago

I have decided to make a diary of sorts of my journey (whether it turns out an epic disaster or a success is TBD) to see if it might help others. I am sure I am not the first person to do so, but I tend to like to document stuff in detail, so thought it might help someone else. This is a bit of a cross-post to the r/zepboundathletes sub, but I've removed some of the athlete-focused info.

Background:

F, mid-40's, 5'5". Mom. Historically "curvy" cyclist. My "average" weight historically hovered between 145-155. 140's was hard to achieve, 155 signaled it was time to calorie restrict. Metabolism was always crap overall. I'd have to do a deficit of 1200-1400 to lose weight (without being insanely strict every day...this average calorie deficit gave me enough flexibility to enjoy a meal out or a couple glasses of wine). Usually did structured bike workouts 3-4 times a week and resistance 2-3 times a week. I always said my body didn't like the longer distances so my longer races were typically around 50 miles or less. HOWEVER. In hindsight, I likely got myself into REDs a number of times. Over the years, the metabolism got crappier (but I was aging!) and I'd get more bouts of illness when my training load increased.

In 2013, I started getting these crazy bouts of cyclical fevers. Once a month I'd have 3 or so days of a 102-104 fever. No other symptoms. But it came on like clockwork. High ANA, elevated CRP, elevated rheumatoid factor. Was just told "you have an autoimmune disease." But nothing was ever specific enough to officially diagnose. Then, one day, the fevers stopped and my bloodwork returned to normal.

Overall, I felt OK until 2021. I had a bad COVID v@xx reaction in early 2021, but that got better after a few months. By September of that year I was super strong on the bike. Then BOOM. Got COVID for the first time. I had a fever for almost 2 weeks. Was so delirious I couldn't even tell you what happened most days. I was sweating through sheets and clothes multiple times week. Could barely make it out of bed. The recovery was insane. I had tastebud dysfunction for 18 months (fried potatoes, iceburg lettuce, carrots, and a few other things tasted like bleach!). I gained about 15 pounds in just a few months. Suddenly, 165 was my "average" and keeping below 170 was a struggle.

In 2024, I suffered a "mild" concussion and I'm still not fully recovered. I did a year of PT and OT for vision and balance issues. I actually maintained the same weight for the first 4 months when I was unable to work out. After 4 months, when I was just starting to incorporate workouts more, I started to get horrible joint pain, my hands and feet started going numb, the fatigue became unbearable, I was feeling so swollen all the time. I was getting Raynauds type symptoms in the winter. Within a few months I went up to 185 pounds. Where I have more or less stayed for the last 16 months. Now, it's a miracle if I can have a couple brief spells in the 170s. Also, I seem to fully be in perimenopause and started an estrogen patch this year. My body absolutely NOT tolerate my old "calorie deficit" ways anymore and a 1200 calorie day is guaranteed to flare my concussion symptoms.

In 2025, I tried phentermine which worked to take off what I assume was "water weight" pretty quickly. But, didn't do much beyond that and disrupted my already disrupted sleep from the numb hands and feet I stopped that. Also tried naltrexone exactly once and had the worst reaction so I never took that again.

I was hesitant to try GLP-1s for a long time because I felt like I was inundated with a lot of horror stories as much as success stories. However, it got to the point I could not ignore the positive research in regards to inflammation, migraine prevention (have always had them, and have gotten worse again after my concussion), and now helping with post-concussive syndrome. Plus, my insurance won't cover them except in very specific circumstances.

FINALLY! Caved and decided to try.

Was totally overwhelmed with the choices, but Fifty 410 seemed easy and well-reviewed, so I impulsively one day decided to pull the plug and go with them. Decided on tirzepatide since the research seems to indicate people have better success and it's generally better tolerated. Unfortunately, the timing was a bit bad as it was literally the day BPI GLP-1 production was shut down (I didn't realize this until later). I decided to go with Hallandale because I wanted an additive-free formula to start so if I had a bad reaction I'd know it was the tirz and not something else (although I have done recovery and immune IVs in the past with all the various additives these companies use and had no issues, but those are always one-off, not daily weekly). Fifty 410 ended up being almost too easy. I chose an option, paid....and heard nothing for days, which kind of freaked me out. I knew I wasn't getting "scammed," but I also worried I'd get strung along with delays that were not being disclosed.

As it turns out, all was well and my tirz arrived yesterday morning. HOWEVER, it was never communicated that Hallandale prescribes flex dosing so I was really thrown off when it arrived and described dosing other than "2.5mg a week for 8 weeks", which is what I "bought." The dosing for the first 4 weeks was 1.2mg, 2 times a week, then up for the second month. Although annoyed about the poor/inaccurate information, I actually did not mind this too much as I was worried about side effects so decided to go ahead and proceed with the split dosing. I was also a bit irritated that a 2 month supply came in one vial since I was hoping to adhere to the 28 day rule to error on the side of caution and information I saw on one of the reddit subs indicated that there would be multiple vials for starter doses through Hallandale.

First 24 hours

I was SO anxious to try this since I can be sensitive to meds and have heard so many horror stories. I have been in a horrible state the last 5 or so days. So much swelling and joint pain that on Monday night I couldn't even bend over to pick something off the ground after my bike ride. Yesterday, I was feverish feeling, nauseous, miserable, weak. Couldn't do hills on the bike I have always done. Debated putting off the first injection, but since this crap I've been going through is the whole reason I did this I decided to give it a go.

Last night, I went to bed feeling "normal." I woke up at midnight because something was jamming me in the side. It was my wrist braces that I must have taken off in my sleep. What was remarkable? Other than a very, very mild tingling feeling they were NORMAL. Or at least normal enough that I was confident it was not numb hands waking me up for the 10th time that night, which has happened almost nightly for the last 16 months.

This morning, I woke up and got out of bed like a normal human being instead of a cripple that can barely walk the first 20 steps.

This morning, I weighed in a full 1.5 pounds less than I did yesterday morning. Which, yeah, I get, is typical, but yesterday I also ate more than I normally do and even had a "last hoorah" soft serve ice cream with my kids after we went mountain biking (I was anticipating that something so fatty might upset my stomach moving forward). So I was expecting today to be a "heavier" day, especially since I typically weigh in more after intense workouts.

This morning, my PCS symptoms, which had been flaring for a month (primarily right eye strain and headaches), are gone.

Feel generally content. All my perimenopausal, overstimulated mom rage is gone. However, that might be tied to the fact I got to spend my morning hours not limping around.

It's not ALL good. I do have what feels like "period cramps" today. Which is one thing I forgot how those feel since I've had an IUD for years. But, so far it's just something I am aware of, but is not impacting my day (I am, however, a woman who spent 2 hours at work in labor thinking it was "just Braxton Hicks contractions").

Normal BM.

There is still plenty of time for bad side effects to kick in, so I will continue to update!

reddit.com
u/Flimsy-Pie-6295 — 16 days ago

I received my first order from Hallandale that indicated 1.2mg 2x a week for 4 week. I was expecting once a week. I am actually relatively sensitive to drugs so hoping for the best, but it was a surprise! Anyone else receive something different than they thought they were getting based on provider options!

reddit.com
u/Flimsy-Pie-6295 — 16 days ago

For those of you who already were tracking calories and macros prior to starting a GLP1 and are athletes, I am wondering if you could give me an idea of what your calorie and/or macro breakdown is?

I am going to start working with a dietitian to make sure that I am fueling properly as I start the GLP1 journey, but would also love to hear what works for everyone. Unfortunately my "calorie deficit quote to lose weight is about 1200 cal a day and my body just does not tolerate that. Which is definitely not enough food to eat as an athlete, so I'm hoping that all the issues I've had with food over the years kind of helps get regulated.

reddit.com
u/Flimsy-Pie-6295 — 17 days ago