I started a new medication four days ago. It dramatically improved symptoms within 24 hours.
I just hyper focused on a project for a few hours for the first time in almost two years.
And yesterday, I realized partway through a client session that I was clear-headed, not fighting through brain fog, and was able to hold the client’s whole history in my head while working with them. I haven’t been able to do that in … I don’t know how long. Years.
I haven’t had brain fog for the past three days. I haven’t had a migraine for the last two days. I haven’t had to take a triptan / migraine rescue med all week.
My face is noticeably, dramatically less puffy with inflammation. My ears haven’t turned bright red with vascular pressure in three days, when that has been a near-daily occurrence since late 2021.
I can think. My mind is moving fast like it used to instead of sluggishly churning. I haven’t lost words partway through a sentence in three days. I’ve been able to access words reliably instead of groping for super common language and failing to find it.
My joints don’t hurt nearly as much, and don’t feel nearly so “floppy”/“loose”. A few days ago, my physical therapist confirmed that the inflammation around my joints is remarkably reduced, less swollen to the touch. My head isn’t hot to the touch. I slept on my side for a little bit last night and it didn’t immediately mess up my neck. The tinnitus isn’t quite gone, but it’s definitely less intense.
I had given up on ever being my old self or having my brain back. This is… this is wildly hopeful.
I started on 2.5mg zepbound. (I wanted vials to microdose with, buuuut insurance only covered the 2.5mg auto injectors. Hopefully this is tolerable. If the side effects are too much, I’ll resort to paying out of pocket for vials.) I was already frighteningly, intimidatingly hopeful about it before starting it, from the research papers and case studies and personal stories I’d read.
Here’s the paper that started me down this rabbit hole: Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome.
“Among 47 cases (mean age 39, range 15–71, 89 % female), 89 % demonstrated clinical benefit with GLP-1RAs for a broad range of problems associated with MCAS.”
Some more resources:
A possible new treatment for MCAS - roundup of research, case studies, etc.
Article sourcing interviews with practitioners/specialists who are prescribing it
Emerging roles of glucagon like peptide-1 in the management of autoimmune diseases and diabetes-associated comorbidities - This goes over a number of things that this med helps with, including PCOS, psoriasis, IBD, and Alzheimer’s.
Many of the studies on this with various conditions are relatively small and preliminary, but very promising. Hashimoto’s, multiple sclerosis (it seems to lead to re-myelination??), OCD (?!), rheumatoid arthritis, fibromyalgia, lupus, and … well, basically any condition that involves chronic inflammation. It’s also thought to have immunomodulation effects. Some folks are even reporting that it helps their c-ptsd symptoms and adhd symptoms. Obviously it also helps histamine-elevated anxiety, but that goes with the mcas treatment bit.
There’s currently a large trial (n=1000) in progress for its impact on long covid.
Also, iirc, no one in the MCAS study became underweight. Just symptom relief.
I did … way too much reading before getting on one of these myself. Lots of browsing forums where people share complications and experiences, trying to deduce a pattern in the problems. Here’s what I found (not scientific at all, just me looking for patterns in personal stories). Disclaimer: none of this is medical advice, I’m just sharing stories and observations, I am not a doctor, etc.
Sometimes people have reactions to the injection site. This may be due to nickel allergies and is sometimes cleared up by switching to a nickel-free needle (which aren’t terribly common, weirdly?).
Tirzepatide (which acts on GLP-1 and GIP) seems to be better tolerated than semaglutide. When semaglutide doesn’t work or causes intolerable side effects, people sometimes have better results when they switch to tirzepatide. But semaglutide does seem to improve symptoms for a significant subset of people.
Tirzepatide from a compounding pharmacy (which is more budget friendly and easier to get ahold of) is more likely to have complications than tirzepatide from the original manufacturer. Probably due to consistency issues. I also wonder if some people are having a reaction to the B-12 that compounding pharmacies frequently include in the tirzepatide solution. (I have no data to corroborate this suspicion, just speculating based on how mcas sensitivity can be with various components/additives of medication.)
People have more issues on higher doses. Currently this stuff’s only usually covered by insurance (in the u.s. at least) if you’re prescribed it for obesity or type 2 diabetes. The starting dose for diabetes (for tirzepatide anyway) is 2.5mg a week (injected). The starting dose for obesity is often 4-5mg/week. If you have mcas/are medication sensitive, this can be Way Too Much. Microdosing is not FDA approved, but i read mostly of people starting microdosing at 0.25 - 0.5mg a week. Microdosing generally causes fewer issues.
The other time people have issues is when they don’t hydrate enough, don’t eat enough protein/fiber, or try to eat larger meals instead of ~6 tiny meals through the day. (On day 2-3, I ran into the consequences of not eating frequent small meals quite enough. The slowed gut motility is obnoxious. Still figuring out the best rhythm for that and hoping it improves, as i’ve heard it often can. I’ve basically had one side effect per day, and each side effect goes away after a day, and then I get the next one.)
As for getting prescriptions: Rheumatologists are getting increasingly aware of this and willing to prescribe, so that’s a possible route if you’re already seeing someone who stays up on research. Otherwise… it’s hard to get on without a 27+ bmi and an additional condition (sleep apnea is a common one, but others are high bp, high cholesterol, fatty liver, and I’m sure there’s others). Possible, but more difficult.
Anyway, I can’t possibly sit on this. Obviously I’m only on day 5, haven’t even taken my second shot yet, but. The positive effects have been unreal. I didn’t think I was ever going to feel clear headed again, I’d nearly given up hope of more than marginal improvements. I’ve been dealing with severe symptoms for nearly five years. (And less severe symptoms for many years before that.)
Two week update…! I tallied up my migraine days / severities / etc over the past 6 weeks.
The 1 month before starting tirzepatide:
4 severe migraine days
9 moderate migraine days
14 mild migraine days
3 migraine free days
The past two weeks on tirzepatide:
1 moderate migraine days (had the migraine before taking the first shot so this might not count)
6 mild migraine days (concentrated around the couple days before the next dose, and/or the couple days before my menstrual cycle began)
7 migraine free days
All while maintaining a fairly stable weight. (Been hyper-vigilant about getting enough protein and hydration as neglecting those are the biggest pitfalls people fall into with this medication.) Actively trying to maintain a stable weight for now just to make sure I can manage caloric needs on this med; I dont want to lose muscle, that would be bad on so many levels.
And my neck was pretty badly misaligned for a good portion of the last week, which historically would mean severe migraine time… but instead I just had the neck discomfort without hardly any migraine. And minimal fluid backup/inflammation. (Confirmed by my physical therapist who was very surprised by how bad my neck was yet how low my pressure/inflammation was.)
But also my joints are more stable overall, and go back into place easier, and stay there for longer once they’re where they should be. Everything is less wobbly since there isn’t so much swelling. AndI mean everything - neck, wrists, fingers, hips, knees, ankles.
Haven’t noticed any worsening in POTS symptoms either. Haven’t noticed POTS symptoms at all, now that I think about it. Haven’t been tracking those like I’ve been tracking inflammatory symptoms / migraine / mast cell stuff though.
Also I haven’t taken an antihistamine in two weeks??? and barely taken any anti-inflammatories / NSAIDs, and only one dose a day when I do take an NSAID???? I was taking waaay too many NSAID’s prior to this just to function. (and in the past few months I started feeling fairly prompt, sharp negative reactions to NSAID’s - cramping and abdominal pain - so I knew the 15+ years of 600-800mg ibuprofen, sometimes multiple times a day, was finally catching up to me and something needed to change.)
My body feels better. I feel better in my body. My brain feels better, I don’t feel like I’m walking with a concussion all the time. I haven’t lost words partway through a sentence in 2 weeks. I’m in less pain.
My mood has improved. I’m down to my pre-quarantine summer dose of my antidepressants do the first time since 2020 (and realizing I may have been using the higher dose to brute force my way through the cranial pressure brain fog). There’s bit of extra somatic anxiety, but I’m not sure if that’s situational/environmental/related to deadline stresses, or if it’s chemical. Will have more clarity on that in a week or so.)
Oh and the digestive side effects have improved dramatically. Whew. That’s the one I was most nervous about. I can tolerate a lot of side effects if it means I get to be *me* again, but my understanding is that certain severe levels of slowed gut motility are as debilitating and life-interfering as the kind of migraine stuff I was dealing with. I’d rather not just trade one problem for another of equal severity. But it’s looking like I’m gonna be okay on that front. (Keeping fingers crossed but overall relieved there.)
The 3 inches (7.6 cm) of fluid/inflammation/?? that disappeared from my waist after the first few days has not returned. Hasn’t gone down any further, so I suspect that was the amount of pure… puffiness/inflammation/fluid-retention I was dealing with. Was briefly worried it was fluid loss from digestive issues but the measurement hasn’t changed after my digestive stuff improved. And I have been hydrating sooo much. So that’s fascinating and a bit wild.
3-4 moderate migraine days (1 was the day of the first shot, beginning before taking the first shot, so I don’t know if it counts) - usually in the day before taking next dose, or the day before menstrual cycle began. Or in one case, the day after eating multiple migraine trigger foods as an experiment.
11 mild migraine days
14 migraine-free days
As a comparison point, the 30 days before beginning tirzepatide, I had:
4 severe migraine days
9 moderate migraine days
14 mild migraine days
3 migraine-free days
- side effects have almost completely calmed down. Still getting the cold feeling within an hour of the injection, but it lasts less long and is less pervasive / intense (as of last week’s shot, it’s down to fingers/nose/toes for the first night and then it goes away). Digestion stuff has vastly improved.
- Inflammation remains SO MUCH better. Normally the couple days before my Emgality shot (monthly anti-migraine peptid that was the most effective treatment I’ve had before the tirzepatide), I will start having more symptoms, worse migraines, more brain fog, etc. I didn’t even notice it this time. Almost missed my Emgality injection day because I didn’t have the symptom cues to remind me. I felt *great* the past few days despite it being the few days before my Emgality injection *and* the few days before my tirzepatide injection.
- It does not *cancel out* mcas, I can’t just… eat whatever I want and be fine. I had one day where I ate bread and dairy as an experiment, and the next day had brain fog / migraine / achey / fatigue all day. Still only a moderate migraine but it’s the worst I’ve had all month. So I still have to avoid histamine triggers. But it significantly reduces severity and frequency of flares. (And makes it easier to avoid eating trigger foods.) my metamour described it as a “blanket on top of the mcas symptoms” - she’s microdosing semaglutide and finds it prevents severe flareups though she still experiences mild to moderate flareups/symptoms. just doesn’t get knocked flat like she was before, which is huge (it’s been *debilitating* for her in a whole-body way, more so than for me, and more sensitive).
- weight talk: Losing weight a little faster than I’d prefer (2lb/wk week, or 0.9kg/week). I’m hoping some of that was just the inflammation/fluid weight and that it’ll thus slow down soon. Making sure I’m getting 60-80g protein/day, fiber, lots of hydration, and enough calories per day. Almost as many calories a day as I was eating before the meds, but still shedding weight faster than I’m comfortable with. So that’s fascinating and I don’t quite understand the mechanism there.
- I continue to feel less… swollen? Bloated? Puffy? felt like my skin was tight for so long. Uncomfortably so. Like yes some dysmorphia feelings because my body didn’t feel/look like it used to, but also it was like feeling swollen over my whole body which involved physical discomfort. Disconcerting experience. That’s gone and I feel like I can feel my skin again. I don’t know if that makes any sense. It’s just like there was …. Fluid or cotton beneath my skin and made everything hard to sense/perceive? and messed with proprioception. (This is also visible visually; I have been taking daily pictures of my face to evaluate this, and it looked significantly less puffy within a few days of the first injection.)
- joints continue to be way more stable. Except my shoulders, they got more unstable, my right shoulder feels like it keeps “dropping” out of place unless I actively engage the muscles. physical therapist confirmed it’s not fully in socket when I have that “dropping” sensation. Very uncomfortable. But my neck / ribs / wrists / ankles / knee / hips are soooo much better.
- I haven’t experienced worsened POTS symptoms, but I know it’s common for POTS to worsen on a GLP-1. The GLP1+GIP like tirzepatide seems to be somewhat better for POTS (there’s some evidence suggesting that worsening POTS symptoms are associated with increased GIP secretion) but reports on how POTS patients respond to it are mixed.
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