MCAS and Peptides

[jafarrr61020]

I'm a few years in to a MCAS diagnosis via long covid (in retrospect, covid severely worsened the MCAS I already had, and my father before me). I've had great luck with traditional MCAS meds getting me from almost bedbound to able to WFH full time and do regular hygiene and household chores, but oh man, tirzepatide has been a lifesaver! After hearing about other MCASers' luck on it I started in November and it's like night and day, I have energy to do things for FUN sometimes! And I can eat avocados again!

Call me greedy, but I want more! Beyond sema and tirz the discussion of peptides in the MCAS spaces I frequent is pretty limited; KPV seems like a good one, TB-500 a dice roll, aaaand that's about it. A smattering of mentions of retatrutide, thymosin alpha 1, NAD+, but I know there's more wisdom.

I've recently started DSIP, unclear whether it's helping anything but I seem to be tolerating it fine. What are you all trying? There are as many symptom and sensitivity constellations as there are MCAS patients, I know, but what's working, what's danger for you?

 

[Hotlongs]

I am on tirz and it is helping with circulation and neuropathy, however, I have had MCAS issues that I have managed with H1s and H2s. What has your experience been with GLP modulating MCAS issues and would you mind sharing the doses?

 

[CNCCurrency]

I'm a few years in to a MCAS diagnosis via long covid (in retrospect, covid severely worsened the MCAS I already had, and my father before me). I've had great luck with traditional MCAS meds getting me from almost bedbound to able to WFH full time and do regular hygiene and household chores, but oh man, tirzepatide has been a lifesaver! After hearing about other MCASers' luck on it I started in November and it's like night and day, I have energy to do things for FUN sometimes! And I can eat avocados again!

Call me greedy, but I want more! Beyond sema and tirz the discussion of peptides in the MCAS spaces I frequent is pretty limited; KPV seems like a good one, TB-500 a dice roll, aaaand that's about it. A smattering of mentions of retatrutide, thymosin alpha 1, NAD+, but I know there's more wisdom.

I've recently started DSIP, unclear whether it's helping anything but I seem to be tolerating it fine. What are you all trying? There are as many symptom and sensitivity constellations as there are MCAS patients, I know, but what's working, what's danger for you?

I like your thinking on KPV, thymosin alpha 1, thymulin might also help you

 

[jafarrr61020]

I am on tirz and it is helping with circulation and neuropathy, however, I have had MCAS issues that I have managed with H1s and H2s. What has your experience been with GLP modulating MCAS issues and would you mind sharing the doses?

I THINK that tirz is just helping with inflammation, but helping a lot . Visibly I'm less inflamed like a lot of people experience (face not puffy, ankles the right size, joints way more flexible) and I'm much clearer and more energetic, I don't have that woozy flu-like exhaustion and low motivation inflammation causes.

I HOPE that tirz is helping more than that. The fact that I've been able to eat some foods that used to give me hives (in small amounts so far, not trying to ruin it) without reactions makes me super optimistic. Even done some intentional exercise again, after years of having to carefully keep my heart rate under 120 to avoid triggering a flare.

I've been on tirz almost six months, starting on 1mg/week (normal starting is 2.5) titrating over time up to 5mg/week for the last month. I've experienced better and better inflammation control as I go up in dose, and as long as the side effects are under control I plan to keep titrating up. Unfortunately it's really doing a number on my sleep, but at least so far it's definitely a worthwhile trade-off.

 

[Hotlongs]

I THINK that tirz is just helping with inflammation, but helping a lot . Visibly I'm less inflamed like a lot of people experience (face not puffy, ankles the right size, joints way more flexible) and I'm much clearer and more energetic, I don't have that woozy flu-like exhaustion and low motivation inflammation causes.

I HOPE that tirz is helping more than that. The fact that I've been able to eat some foods that used to give me hives (in small amounts so far, not trying to ruin it) without reactions makes me super optimistic. Even done some intentional exercise again, after years of having to carefully keep my heart rate under 120 to avoid triggering a flare.

I've been on tirz almost six months, starting on 1mg/week (normal starting is 2.5) titrating over time up to 5mg/week for the last month. I've experienced better and better inflammation control as I go up in dose, and as long as the side effects are under control I plan to keep titrating up. Unfortunately it's really doing a number on my sleep, but at least so far it's definitely a worthwhile trade-off.

You might be interested in this article https://www.healthrising.org/blog/2025/11/03/glp-1-agonist-mounjaro-chronic-fatigue-fm-long-covid/

I have had some gastro side effects at 0.25mg but the famotidine helps. I am also trialing glutathione and glycine/nac so I can metabolize thiamine (vit b1) better.

 

[DunningKruger]

Also MCAS, with an EpiPen just in case. I have tried the following (in order of fave to never again) :

Epitalon

Tesamorelin

SS-31

KPV

MOTS-C

BPC-157

TB-500

Kisspeptin

Retatrutide

Glutathione

Ipamorelin

Semax

Selank

Thymosin Alpha-1

5-Amino 1MQ

NAD+

GHK-Cu

Never again:

DSIP

PT-141

Melanotan 2

I tolerate most well, but I do respond poorly to MOTS-C, GHK-Cu (less so when diluted 1:5) , Reta, Tesamorelin. Even KPV can trigger inflammation for me, not necessarily throughout the day, but the injection site, and sometimes other sites, tend to flare at night as histamine rises. My assumption is that it’s a mix of local trauma, clearance kinetics, and excipients, with possible endotoxin units also being a factor.

Do you keep an EpiPen on hand in case your immune system decides to rebel one day? It may never be needed, but I see it as a prudent precaution after reading anecdotal reports of anaphylactoid reactions after using compounds for months (MOTS-C seems to be a big culprit here) .

You guys have me curious about Tirzepatide for its potential effects on inflammation and neuropathy.

 

[Hotlongs]

Also MCAS, with an EpiPen just in case. I have tried the following (in order of fave to never again) :

Epitalon

Tesamorelin

SS-31

KPV

MOTS-C

BPC-157

TB-500

Kisspeptin

Retatrutide

Glutathione

Ipamorelin

Semax

Selank

Thymosin Alpha-1

5-Amino 1MQ

NAD+

GHK-Cu

Never again:

DSIP

PT-141

Melanotan 2

I tolerate most well, but I do respond poorly to MOTS-C, GHK-Cu (less so when diluted 1:5) , Reta, Tesamorelin. Even KPV can trigger inflammation for me, not necessarily throughout the day, but the injection site, and sometimes other sites, tend to flare at night as histamine rises. My assumption is that it’s a mix of local trauma, clearance kinetics, and excipients, with possible endotoxin units also being a factor.

Do you keep an EpiPen on hand in case your immune system decides to rebel one day? It may never be needed, but I see it as a prudent precaution after reading anecdotal reports of anaphylactoid reactions after using compounds for months (MOTS-C seems to be a big culprit here) .

You guys have me curious about Tirzepatide for its potential effects on inflammation and neuropathy.

I am very interested in your experiences with the top 5 you listed. Could you speak to how each of those helped you?

 

[tubby]

Anecdotally, it seems most who swear by tirzepatide for its anti-inflammatory effects go on to be disappointed with retatrutide. Everyone is different, of course.

 

[jafarrr61020]

I like your thinking on KPV, thymosin alpha 1, thymulin might also help you

Thanks for the ideas! I'll look into thymulin, I haven't seen that one yet

 

[jafarrr61020]

Anecdotally, it seems most who swear by tirzepatide for its anti-inflammatory effects go on to be disappointed with retatrutide. Everyone is different, of course.

Ah, that's really good to know, thanks!

 

[jafarrr61020]

Also MCAS, with an EpiPen just in case. I have tried the following (in order of fave to never again) :

Epitalon

Tesamorelin

SS-31

KPV

MOTS-C

BPC-157

TB-500

Kisspeptin

Retatrutide

Glutathione

Ipamorelin

Semax

Selank

Thymosin Alpha-1

5-Amino 1MQ

NAD+

GHK-Cu

Never again:

DSIP

PT-141

Melanotan 2

I tolerate most well, but I do respond poorly to MOTS-C, GHK-Cu (less so when diluted 1:5) , Reta, Tesamorelin. Even KPV can trigger inflammation for me, not necessarily throughout the day, but the injection site, and sometimes other sites, tend to flare at night as histamine rises. My assumption is that it’s a mix of local trauma, clearance kinetics, and excipients, with possible endotoxin units also being a factor.

Do you keep an EpiPen on hand in case your immune system decides to rebel one day? It may never be needed, but I see it as a prudent precaution after reading anecdotal reports of anaphylactoid reactions after using compounds for months (MOTS-C seems to be a big culprit here) .

You guys have me curious about Tirzepatide for its potential effects on inflammation and neuropathy.

I do keep my Epipen with me even around the house since I started these next-level peps. I also carried it around when I was first on tirz but after six months I've gotten pretty confident and just have it the couple of times I switched providers. That's an excellent reminder, thank you.

And also thank you for this list to consider! I just started KLOW, having seen that three of the ingredients might be good, and just crossed my fingers about GHK-Cu. I have a lot of skin symptoms with MCAS and I thought worth a try, as long as I don't react badly it might be a bonus for my specific constellation of symptoms. I've been tolerating DSIP fine; why on your "never again"? Did you react, or just a waste?

 

[Chili777]

Reta and KPV both did wonders for my inflammation. I'm keeping them both around long term.

 

[DunningKruger]

I've been tolerating DSIP fine; why on your "never again"? Did you react, or just a waste?

Just a touch of disappointment. I found it didn't do anything for my sleep; no change of metrics on my Oura tracker. I do sleep fairly well anyway, so I don't believe that it's one I "need." It was worth a shot. Now Epitalon... that gave me the best sleep of my life while on it.

Do you find your skin symptoms to be both dietary and environmental with your MCAS?

 

[DunningKruger]

I am very interested in your experiences with the top 5 you listed. Could you speak to how each of those helped you?

Gladly.

Epitalon
Rejuvenating sleep. I awoke refreshed, had noticeably better energy, clarity, and recall. The dreams were wild, more vivid than usual, and hung around a lot longer post waking. I took the minimum effective dose (not the western dosing) and it exceeded expectations. I look forward to running a second course later in the year.

Tesamorelin
For body recomposition. I used it in conjunction with Reta for two months and not only retained, but gained lean mass while using it. Again, only used 1mg instead of 2mg because I was paying North American resale prices. It still worked fantastically; I've never loved my body so much.

SS-31 & MOTS-C
Again with the clarity and energy. I'm a big fan of being able to function without feeling exhausted or scattered, and these two delivered. I do have to dilute MOTS-C though to reduce a several-days-long, itchy, red ISR.

KPV
This I use locally for downstream neuropathic pain, and it works like a charm. So, even if the injection site swells and becomes red and itchy each night, it gives me almost a full day of minimal referred nerve pain, plus increased range of motion in one of my legs. I tried it on a whim not expecting much and it is now a daily aid. It works so well that I have post-poned my nerve blocking appointment.

 

[jafarrr61020]

Just a touch of disappointment. I found it didn't do anything for my sleep; no change of metrics on my Oura tracker. I do sleep fairly well anyway, so I don't believe that it's one I "need." It was worth a shot. Now Epitalon... that gave me the best sleep of my life while on it.

Do you find your skin symptoms to be both dietary and environmental with your MCAS?

Both; with food I get hives along with typical anaphylaxis in a bad reaction, and a milder one will just give me a day of fatigue and hard red bumps on my neck and chest the next day that last a couple weeks. Seasonally and cycling with longer flares I get folliculitis (I think?) on my scalp especially, which can be painful. Tirz (and still being careful with food) has just about eliminated the first type of reaction for me, I've only gotten hives once since starting and that was when I accidentally ate one of my worst triggers. Scalp reactions are better but not eliminated.

Similar with DSIP so far for me, but I'll finish the cycle to be sure. After that though, you've convinced me, I'm trying epitalon next!

 

[DunningKruger]

Both; with food I get hives along with typical anaphylaxis in a bad reaction, and a milder one will just give me a day of fatigue and hard red bumps on my neck and chest the next day that last a couple weeks. Seasonally and cycling with longer flares I get folliculitis (I think?) on my scalp especially, which can be painful. Tirz (and still being careful with food) has just about eliminated the first type of reaction for me, I've only gotten hives once since starting and that was when I accidentally ate one of my worst triggers. Scalp reactions are better but not eliminated.

Similar with DSIP so far for me, but I'll finish the cycle to be sure. After that though, you've convinced me, I'm trying epitalon next!

Ooh! I hope I didn’t oversell it, and I hope you love it!

Ahhh, yes. The reactive lymph nodes. If you eat something inflammatory do you also wake the next morning with what I dub, “lymph acne?” If I eat certain fruit, vegetables, grains or legumes, I get these raised, red papules that aren’t actual acne around the nodes in the neck/jaw, traps, and even ears. It’s awful. They’re these painful, angry-looking bumps that take a fortnight to clear.

And don’t get me started on the joint pain, which I’m sure you know all about too. Oof!

 

[DunningKruger]

I wasn’t sure if the hard red bumps you mentioned were just inflamed nodes or that fake acne I mentioned.

 

[jafarrr61020]

Ooh! I hope I didn’t oversell it, and I hope you love it!

Ahhh, yes. The reactive lymph nodes. If you eat something inflammatory do you also wake the next morning with what I dub, “lymph acne?” If I eat certain fruit, vegetables, grains or legumes, I get these raised, red papules that aren’t actual acne around the nodes in the neck/jaw, traps, and even ears. It’s awful. They’re these painful, angry-looking bumps that take a fortnight to clear.

And don’t get me started on the joint pain, which I’m sure you know all about too. Oof!

YES those weird not-acne bumps! Not swollen lymph nodes, much more like acne, but now that you mention it they do appear near lymph nodes, I never clocked that. Honestly I'd way rather have actual acne, that goes away so much faster.

A non-pep treatment that's helped is cromolyn sodium. If you have access to a prescription for that try putting it in a mini spray bottle, undiluted, and mist your skin after showering and let air dry; when I am consistent with that it reduces the incidence of the bumps by at least half.

 

[DunningKruger]

Thank you for the great tip. It could help so many others. I’ll look into it.

 

[Hotlongs]

Gladly.

Epitalon
Rejuvenating sleep. I awoke refreshed, had noticeably better energy, clarity, and recall. The dreams were wild, more vivid than usual, and hung around a lot longer post waking. I took the minimum effective dose (not the western dosing) and it exceeded expectations. I look forward to running a second course later in the year.

Tesamorelin
For body recomposition. I used it in conjunction with Reta for two months and not only retained, but gained lean mass while using it. Again, only used 1mg instead of 2mg because I was paying North American resale prices. It still worked fantastically; I've never loved my body so much.

SS-31 & MOTS-C
Again with the clarity and energy. I'm a big fan of being able to function without feeling exhausted or scattered, and these two delivered. I do have to dilute MOTS-C though to reduce a several-days-long, itchy, red ISR.

KPV
This I use locally for downstream neuropathic pain, and it works like a charm. So, even if the injection site swells and becomes red and itchy each night, it gives me almost a full day of minimal referred nerve pain, plus increased range of motion in one of my legs. I tried it on a whim not expecting much and it is now a daily aid. It works so well that I have post-poned my nerve blocking appointment.

Thank you for the info. I am still not sure what Tesamorelin does for body comp but you gave me a good starting point to look into it!