MCAS and Peptides

jafarrr61020

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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 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?
 
jafarrr61020 said:
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?
Click to expand...
I like your thinking on KPV, thymosin alpha 1, thymulin might also help you
 
Hotlongs said:
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?
Click to expand...
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.
 
jafarrr61020 said:
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.
Click to expand...
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.
 
Last edited:
Also MCAS, with an EpiPen just in case. I have tried the following (in order of fave to never again):
  1. Epitalon
  2. Tesamorelin
  3. SS-31
  4. KPV
  5. MOTS-C
  6. BPC-157
  7. TB-500
  8. Kisspeptin
  9. Retatrutide
  10. Glutathione
  11. Ipamorelin
  12. Semax
  13. Selank
  14. Thymosin Alpha-1
  15. 5-Amino 1MQ
  16. NAD+
  17. GHK-Cu
Never again:
  1. DSIP
  2. PT-141
  3. 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. 🤔
 
DunningKruger said:
Also MCAS, with an EpiPen just in case. I have tried the following (in order of fave to never again):
  1. Epitalon
  2. Tesamorelin
  3. SS-31
  4. KPV
  5. MOTS-C
  6. BPC-157
  7. TB-500
  8. Kisspeptin
  9. Retatrutide
  10. Glutathione
  11. Ipamorelin
  12. Semax
  13. Selank
  14. Thymosin Alpha-1
  15. 5-Amino 1MQ
  16. NAD+
  17. GHK-Cu
Never again:
  1. DSIP
  2. PT-141
  3. 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. 🤔
Click to expand...
I am very interested in your experiences with the top 5 you listed. Could you speak to how each of those helped you?
 
tubby said:
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.
Click to expand...
Ah, that's really good to know, thanks!
 
DunningKruger said:
Also MCAS, with an EpiPen just in case. I have tried the following (in order of fave to never again):
  1. Epitalon
  2. Tesamorelin
  3. SS-31
  4. KPV
  5. MOTS-C
  6. BPC-157
  7. TB-500
  8. Kisspeptin
  9. Retatrutide
  10. Glutathione
  11. Ipamorelin
  12. Semax
  13. Selank
  14. Thymosin Alpha-1
  15. 5-Amino 1MQ
  16. NAD+
  17. GHK-Cu
Never again:
  1. DSIP
  2. PT-141
  3. 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. 🤔
Click to expand...
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?
 
jafarrr61020 said:
I've been tolerating DSIP fine; why on your "never again"? Did you react, or just a waste?
Click to expand...
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?
 
Hotlongs said:
I am very interested in your experiences with the top 5 you listed. Could you speak to how each of those helped you?
Click to expand...
Gladly.

  1. Epitalon
    1. 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.
  2. Tesamorelin
    1. 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.
  3. SS-31 & MOTS-C
    1. 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.
  4. KPV
    1. 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.
 
DunningKruger said:
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?
Click to expand...
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!
 
jafarrr61020 said:
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!
Click to expand...
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!
 
I wasn’t sure if the hard red bumps you mentioned were just inflamed nodes or that fake acne I mentioned.
 
DunningKruger said:
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!
Click to expand...
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 said:
Gladly.

  1. Epitalon
    1. 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.
  2. Tesamorelin
    1. 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.
  3. SS-31 & MOTS-C
    1. 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.
  4. KPV
    1. 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.
Click to expand...
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!
 
It sounds like OP has largely settled their hives and inflammatory issues with tirzepatide, but for the benefit of others I thought I'd throw out a plug for the "zero carb" (AKA carnivore) diet as a thing to experiment with as well. I did it for 60 days myself before deciding I just missed eating other things way too much for what for me was a minimal benefit (I didn't have the health problems most of the other people doing it had so didn't really have anything to put in remission). But it's a fantastic framework for an elimination diet experiment that if properly constructed, allows one to minimize potential allergens without having to engage in extended fasting (which is a much more monumental bridge to cross). I do say "zero carb" specifically because those are the people within that community that focus on the potential therapeutic aspects of allergen elimination VS the "I want to do the trendy thing I saw on social media" people.
 
tubby said:
It sounds like OP has largely settled their hives and inflammatory issues with tirzepatide, but for the benefit of others I thought I'd throw out a plug for the "zero carb" (AKA carnivore) diet as a thing to experiment with as well. I did it for 60 days myself before deciding I just missed eating other things way too much for what for me was a minimal benefit (I didn't have the health problems most of the other people doing it had so didn't really have anything to put in remission). But it's a fantastic framework for an elimination diet experiment that if properly constructed, allows one to minimize potential allergens without having to engage in extended fasting (which is a much more monumental bridge to cross). I do say "zero carb" specifically because those are the people within that community that focus on the potential therapeutic aspects of allergen elimination VS the "I want to do the trendy thing I saw on social media" people.
Click to expand...
I agree! Carnivore was the best thing I ever did for my health. Now the flares only happen if I add back in certain plant foods. And as a bonus, there’s no time wasted prepping food; thaw, salt cure, temper, cook, done.

It’s been seven years now, and while it’s not a cure-all, I see it as a cures-most. I do have to go for phlebotomy every three months to lower ferritin though.
 
This is an interesting thread - I feel like I should weigh in as well. I've got an MCAS diagnosis (in addition to POTS, Fibro, ME/CFS). I was just given a second Bone Marrow Biopsy, as my Tryptase is chronically elevated - Next Generation Sequencing is being done to look for rare/wild mutations and determine if there is a clonal cause. I receive IVIg for neuropathies, and was on Xolair for MCAS, now Rhapsido. Tryptase has remained elevated.

I started out with Reta, titrated slowly up to 2 mg weekly, and back down to 1.5 mg. I have some elevation of HR and my sleep is not great (it was still terrible before I started). Reta has normalized my gut to where I produce butyrate again, and I have recovered lost foods and can mostly eat what I wish these days. My weight stabilized, but it is still higher than before I fell ill, and oddly I haven't lost much despite appetite suppression.

I keep seeing these posts that swear by Tirz so I am attempting to get my hands on it to try instead, to see if there is a better anti-inflammatory effect. I'm curious if folks are using micro doses, or need more to get a proper effect.
 
CuttingEdgeScience said:
This is an interesting thread - I feel like I should weigh in as well. I've got an MCAS diagnosis (in addition to POTS, Fibro, ME/CFS). I was just given a second Bone Marrow Biopsy, as my Tryptase is chronically elevated - Next Generation Sequencing is being done to look for rare/wild mutations and determine if there is a clonal cause. I receive IVIg for neuropathies, and was on Xolair for MCAS, now Rhapsido. Tryptase has remained elevated.

I started out with Reta, titrated slowly up to 2 mg weekly, and back down to 1.5 mg. I have some elevation of HR and my sleep is not great (it was still terrible before I started). Reta has normalized my gut to where I produce butyrate again, and I have recovered lost foods and can mostly eat what I wish these days. My weight stabilized, but it is still higher than before I fell ill, and oddly I haven't lost much despite appetite suppression.

I keep seeing these posts that swear by Tirz so I am attempting to get my hands on it to try instead, to see if there is a better anti-inflammatory effect. I'm curious if folks are using micro doses, or need more to get a proper effect.
Click to expand...
I have been at 0.25mg for 2 weeks and feel like it has been helping quite a bit with normalizing body temperature and giving me mental stamina. I don't get as tired doing office work. I am in my 30s and have worked in a competitive white collar industry for most of my career before getting sick. Up until recently, I have had to break up work over the course of the day and still sometimes crashed.
 
DunningKruger said:
Gladly.

  1. Epitalon
    1. 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.
  2. Tesamorelin
    1. 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.
  3. SS-31 & MOTS-C
    1. 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.
  4. KPV
    1. 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.
Click to expand...
Your post has prompted me to order some Epitalon. I've been using DSIP and I'm still waking up at 4am unable to get back to sleep no matter how much exercise I've done the previous day, and how tired I was when I went to bed.
Hopefully I'll have more success with Epitalon.
 
DunningKruger said:
Gladly.

  1. Epitalon
    1. 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.
  2. Tesamorelin
    1. 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.
  3. SS-31 & MOTS-C
    1. 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.
  4. KPV
    1. 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.
Click to expand...
Regarding the Epitalon, what dose did/do you use? I'm reading into it but there's a lot of discrepancy between recommend doses, sometimes by as much as 10x the difference. You mentioned 'western dosing' and I've read that elsewhere. It's all quite confusing.
 
jafarrr61020 said:
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.
Click to expand...
Do you think nasalcom/nasalcrom would work for topical treatment? The oral form is so expensive.
 
Hotlongs said:
Do you think nasalcom/nasalcrom would work for topical treatment? The oral form is so expensive.
Click to expand...
I would definitely give it a try! It's been a while since I first started this application so my memory might fail me, but I feel like it was a month or so before I was positive that it was helping. It was then that I went through three or so notable food reactions that didn't cause bumps when I felt sure. So maybe try it for a few weeks and then pay attention to whether they're popping up?
And yeah, the cost, I hear you... I can't afford to take it internally anymore, but with the spray I get a great effect with only one ampule a week so I've been very slowly slowly using an old supply.
 
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