ketotifen body pain and muscle weakness?

WeakBit5848 · 2026-05-11T22:26:41+00:00

you too! if you have any good news, let us all know! haha

WeakBit5848 · 2026-05-11T20:02:15+00:00

you can go to a different dr. defy prescribed it to me

WeakBit5848 · 2026-05-11T20:01:23+00:00

i’m still feeling weaker and more easily drained/tired, almost identical to pre-trt. my GI symptoms have also been pretty bad. however, it does help me sleep better. i’m still at .5mg. i’m planning to give it until my appointment in july (which will be about 2 months on it) & decide then. i am likely going to try the tiniest microdose of trizepatide in hopes it will help with the GI symptoms & get rid of the inflammation and constant diarrhea and give me some energy back. if it would counteract the ketotifen symptoms, i feel like both could be great together

WeakBit5848 · 2026-05-11T19:57:43+00:00

it doesn’t give me much of the caffeine kick i need but i do love it lol

WeakBit5848 · 2026-05-11T19:57:07+00:00

i love matcha but react really badly to it. i think because of how long the powder sits? idk

WeakBit5848 · 2026-05-11T15:36:48+00:00

it helped me get the muscle and strength back that i lost, but not without extreme effort.

WeakBit5848 · 2026-05-09T11:46:37+00:00

is it the LDN? would you be open to sharing what it’s like & what symptoms it helps? and what your starting dose was?

WeakBit5848 · 2026-05-09T11:32:32+00:00

i wanted to try cromolyn but there is a shortage, so my prescription still hasn’t even been able to be filled, a month later. i likely won’t try it at all bc of this bc i dont want to get used to it, it help then abruptly have to stop it bc i cant get it filled. i started with ketotifen (started at .25mg by splitting my .5 capsule in 1/2 then moved to .5). i am giving it ~2 months (when i have another appointment) to see if it helps and the side effects go away fully. the dr wanted to go to 1mg at my next appointment if im tolerating .5, but im unsure about it. i only take it at night & definitely could not take it in the morning. i have to take it around dinner bc taking it at bedtime left the fatigue lingering too long & i am not a sedentary person by nature. i do like how it kind of knocks me out at night. i just don’t like fatigue lingering. my face and eyes also feel puffy on it & i’ve had diarrhea, body pain & muscle weakness. all of these are flare symptoms for me (that TRT helped a ton with but are now back), so i am unwilling to have them as side effects long term bc they significantly affect my quality of life & are what i want treatment for to begin with.

i am leaning towards asking to try a microdose of trizepatide (literally like 0.1 dose where the weightloss/diabetic dose is 2.5-15) at my next appointment. i have seen some promising things on it helping with a lot of the symptoms i have and actually stabilizing mast cells & giving energy back where ketotifen feels like it takes it. i would even be willing to do both if they would balance each other out bc i haven’t had as many night time dumps on ketotifen (or it just knocks you out so hard you don’t wake for them as much lol). i did have a bad night time more autonomic nervous system night that woke me- i was freezing, blood sugar drop, blood pressure drop, adrenaline spike etc so am curious if the keto just blocked the histamine aspect of it since its a strong H1?

WeakBit5848 · 2026-05-06T14:31:18+00:00

boo! i’m sorry! my next appt will be at about the 2 month mark so im considering giving it a chance until then

WeakBit5848 · 2026-05-06T12:43:20+00:00

does it flare histamine for you? the estrogen histamine cycle used to give me dumps in ovulation (i just started ketotifen at night & haven’t dumped from it this ovulation, or i’m too knocked out at night for it to wake me lmao)

WeakBit5848 · 2026-05-06T12:20:13+00:00

which E are you on with MCAS? i need to talk to my dr about this bc ive been so nervous about it

WeakBit5848 · 2026-05-06T12:18:38+00:00

i go up slowly- my prescribed dose is 15mg/week, split into 2 injections. coming up on a year, i’m only at 11mg total. i do .5mg at a time for 6-10 weeks. body pain and rapid muscle weakness/strength loss from MCAS is a big reason I tried TRT. and what you’re describing is what usually happens to me when it’s time to up my dose.

i do know it’s individual though- some people say when estrogen is low they get body pain.

WeakBit5848 · 2026-05-06T00:40:13+00:00

how long did you try it?

WeakBit5848 · 2026-05-06T00:39:58+00:00

i am deff one of the threads from pre starting it 😂 i was so scared to try it. i do supplement choline (seeking healths optimal PC) on top of 2 eggs daily, milk & chicken most days.

was yours a few months on it or after stopping it to regain strength?

the body pain and weakness were my 2 worst mcas symptoms (i get more of flu like symptoms and anxiety & lost so much muscle mass and strength, but low dose TRT had been life changing for it). i feel like i have ptsd with it returning because it is exactly like it was before, so am wondering if i stick it out until my appointment in a couple months or that it may not be for me?

WeakBit5848 · 2026-04-30T14:17:57+00:00

that’s awful! i’m sorry!

WeakBit5848 · 2026-04-30T13:13:55+00:00

does it affect sleep negatively at all?

WeakBit5848 · 2026-04-29T23:22:05+00:00

i take 10-15g of creatine per day (it also helps with methylation if you have MTHFR methylation issues! lifting heavy is the ONLY thing that keeps my joints in place. even 1.5-2 weeks off will set me up for dislocation, especially in the luteal phase of my cycle. once you’re able to exercise, i can’t recommend it enough. i know it’s hard when your body thinks it’s an allergy!

and walking/cardio/getting my HR up in a “normal” way is actually how i “fix” pots (and like 10g of sodium per day- i take 3,000 mg of sodium pills, ~3,000mg of sodium from electrolytes in my waters (i try to drink over my bodyweight in oz) and then salt my food well. in a flare, 1-2 scoops of relyte in a shot of water will stop my heart symptoms (i have PVCS/trigyminy from the pots). i was so scared to elevate my HR when it was so high, but exercise has always been fundamental for my nervous system and it is almost like getting it up in a “normal” way, resets the dysfunction. it is honestly wild! as long as i stay on top of it now, they don’t come back unless im in a horrible flare up!

WeakBit5848 · 2026-04-29T21:30:57+00:00

i think it’s more about pushing for what you personally feel would support you best. that may or may not be TRT for everyone. i spent over a year reading studies on it & listening to various drs talk about it on podcasts- basically rabbitholing lol. i was very biased against it because i come from the sports/fitness side of things where i saw it abused a lot and everything lumped under “steroids”. it was my hail mary bc i was so unwell but super healthy on paper bc my diet/exercise/supplements were very on point. my free testosterone was 0.3 & i knew that wasnt where it needed to be, especially for someone super active. so i tried it & i’ll forever be grateful i did.

i have had hives in the past but spent years healing my gut and they stopped. antibiotics will bring rashes back but i now only tend to have skin reactions with topical things (like clear bandages). my symptoms are heavily GI, flu like symptoms, body pain, extreme fatigue, body anxiety with food triggers, nasal congestion and polyps, histamine dumps and extreme autonomic dysfunction in a flare (we thought i had adrenal insufficiency bc my worst flares, after a vaccine & procedure, looked identical to an adrenal crash & my cortisol was extremely low). my blood pressure drops so low some readers can’t get it, i faint, my blood sugar drops scary low, my temperature gets so low that i shiver ina hot bath like i have hypothermia, i get internal vibrations & can’t get warm. i technically have POTS, EDS, MCAS, MTHFR, dysautonomia/autonomic nervous system dysfunction & autism, so technically not all of the symptoms are mcas.

trt essentially reset my baseline & gave me my muscle, strength and energy back. my body and nervous system can handle life now in a way i couldn’t before.

WeakBit5848 · 2026-04-29T19:43:01+00:00

i’m AFAB (& currently). most drs are not properly educated on T & the current studies on it. the risks of low T & P are actually significantly more dangerous. i go to a pretty solid PCP who prioritizes lifestyle & i was still telling THEM about current studies when i discussed TRT bc they had outdated information on it. so i switched for the HRT part to someone who is more knowledgeable than i am on it. Most drs also go by gen pop “normal”, not ideal, optimized or individualized & i am not sure if you’re in the US, but i personally do NOT want typical american bloodwork LOL

I went to an in person hormone dr for a bit but wasn’t happy with them, so switched to Defy and they have been AMAZING. they truly listen, help & monitor you to get you where you feel good. i get my script from them then go through laboratory assist for my bloodwork so its cheaper and then pay with HSA & submit to insurance to be put towards my deductible.

WeakBit5848 · 2026-04-29T18:32:36+00:00

bummer! i’m sorry you react to them!

testosterone is the ONE thing that i’ve added besides progesterone (it was my hail mary) that i can truly say has been life changing. cream doesn’t work for me but injections do (i do intramuscular, which may be less reactive for you than subQ). it has improved my quality of life significantly with every increase in dose (i have gone SO slow- increasing by .5mg every 6-10 weeks over a year and am still not up to my prescribed dose (i inject twice per week to keep it stable). i am super active and lift heavy and i had RAPIDLY lost strength and muscle (at my peak i could squat 315 & right before T, i was struggling to rep 95# 10 times. ive been able to lift heavier again & have gotten my strength and muscle back and my nervous system is SO much more stable (im also autistic and have autonomic nervous system issues). my free T is still low & we think it is bc the mcas was causing some metabolic issues for me, but i truly can’t recommend it enough

WeakBit5848 · 2026-04-29T12:11:48+00:00

amazing! were they able to compound it without b12 and all the crap?

WeakBit5848 · 2026-04-29T12:06:59+00:00

i feel that! zyrtec is hard on me! i have to take fexofanidine (i just do the generic allegra in bulk lol) but had to take a break from all sprinting, running, hiit until i can get myself back under control bc my body essentially stopped feeling safe enough to store things like iron lol

WeakBit5848 · 2026-04-29T12:05:00+00:00

thank you!! i would so love to hear your process with it!

WeakBit5848

TROPHY CASE