MCAS and Peptides

OP seems to have mostly gotten their hives and inflammation under control thanks to tirzepatide, but I figured I'd mention the "zero carb" (carnivore) way of eating for anyone else who might want to try it out. Personally I stuck with it for 60 days, then called it quits because I missed other foods far too much relative to the small payoff it gave me (I wasn't dealing with the conditions that most others on it had, so I had nothing really to send into remission). Still, it works really well as a structured elimination diet experiment: done right, it lets you cut down on possible allergens without resorting to long fasts (which are a far bigger hurdle to get over). I specify "zero carb" on purpose, since that's the subset of the community centered on the possible therapeutic side of removing allergens, as opposed to the folks just chasing whatever trend they saw on social media.
 
tubby said:

OP seems to have mostly gotten their hives and inflammation under control thanks to tirzepatide, but I figured I'd mention the "zero carb" (carnivore) way of eating for anyone else who might want to try it out. Personally I stuck with it for 60 days, then called it quits because I missed other foods far too much relative to the small payoff it gave me (I wasn't dealing with the conditions that most others on it had, so I had nothing really to send into remission). Still, it works really well as a structured elimination diet experiment: done right, it lets you cut down on possible allergens without resorting to long fasts (which are a far bigger hurdle to get over). I specify "zero carb" on purpose, since that's the subset of the community centered on the possible therapeutic side of removing allergens, as opposed to the folks just chasing whatever trend they saw on social media.
I'm on the same page — going carnivore did more for me than anything else. These days, a flare only kicks in when I reintroduce particular plant-based items. Plus, it saves me a ton of kitchen time: defrost, salt cure, bring to temperature, cook, finished.

Seven years in, and although it doesn't fix everything, I'd call it a fix for most things. That said, I still need phlebotomy treatments every 3 months to bring ferritin down.
 
This thread caught my attention, and I figured I'd add my own experience to the mix. Alongside POTS, Fibro, and ME/CFS, I carry an MCAS diagnosis. A second Bone Marrow Biopsy was recently ordered for me because my Tryptase stays elevated - they're running Next Generation Sequencing to check for rare/wild mutations and to see whether a clonal cause is behind it. IVIg is what I get for neuropathies, and for MCAS I was previously on Xolair, now Rhapsido. Tryptase levels haven't come down.

My start was with Reta, going up slowly to 2 mg weekly, then reducing to 1.5 mg. There's been some HR elevation, and my sleep isn't good (though it was already awful before I began). Thanks to Reta, my gut has normalized to the point where butyrate is produced again, I've gotten back foods I'd lost, and these days I can eat more or less whatever I want. My weight leveled off, yet it remains above what it was before I got sick, and strangely, appetite suppression hasn't translated into much loss.

Posts praising Tirz keep popping up, so I'm trying to obtain some to switch to, hoping the anti-inflammatory effect might be stronger. I'd like to know whether people here go with micro doses, or whether a larger amount is needed for a real effect.
 
CuttingEdgeScience said:

This thread caught my attention, and I figured I'd add my own experience to the mix. Alongside POTS, Fibro, and ME/CFS, I carry an MCAS diagnosis. A second Bone Marrow Biopsy was recently ordered for me because my Tryptase stays elevated - they're running Next Generation Sequencing to check for rare/wild mutations and to see whether a clonal cause is behind it. IVIg is what I get for neuropathies, and for MCAS I was previously on Xolair, now Rhapsido. Tryptase levels haven't come down.

My start was with Reta, going up slowly to 2 mg weekly, then reducing to 1.5 mg. There's been some HR elevation, and my sleep isn't good (though it was already awful before I began). Thanks to Reta, my gut has normalized to the point where butyrate is produced again, I've gotten back foods I'd lost, and these days I can eat more or less whatever I want. My weight leveled off, yet it remains above what it was before I got sick, and strangely, appetite suppression hasn't translated into much loss.

Posts praising Tirz keep popping up, so I'm trying to obtain some to switch to, hoping the anti-inflammatory effect might be stronger. I'd like to know whether people here go with micro doses, or whether a larger amount is needed for a real effect.
For 2 weeks now I've stayed at 0.25mg, and the effects seem fairly positive: my body temperature feels more regulated and I have more mental endurance. Office tasks no longer drain me the way they used to. I'm in my 30s and spent most of my working life in a high-pressure white collar field until illness hit. Until not long ago, I had to split my work across the day and would still hit crashes at times.
 
DunningKruger said:

Hotlongs said:

DunningKruger said:

I also have MCAS and carry an EpiPen as a safeguard. Here is what I have experimented with (ranked from best to never touching 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
Won't touch again:

  1. DSIP
  2. PT-141
  3. Melanotan 2
Most of them sit fine with me, yet MOTS-C, GHK-Cu (better when diluted 1:5), Reta, and Tesamorelin all give me a bad response. Even KPV has set off inflammation for me at times—not always all day, but the shot spot, and occasionally elsewhere, tends to act up in the evening when histamine climbs. My guess is that local irritation, how quickly things clear, and the excipients all play a role, and endotoxin units could be part of it too.

Do you have an EpiPen ready in case your immune system turns on you someday? It might never be required, but I consider it a wise safeguard after coming across anecdotal accounts of anaphylactoid reactions following months of using certain compounds (MOTS-C appears to be a major offender here).

Now you all have me wondering about Tirzepatide for what it might do for inflammation and neuropathy. 🤔
Of the 5 you ranked highest, I'd really like to hear about your results. Can you describe what each one did for you?
Happy to share.

  1. Epitalon
    1. Sleep that restores. I woke up feeling refreshed, with clearly improved energy, mental sharpness, and memory. My dreams were intense, far more vivid than I normally get, and they stayed with me well after I got up. I went with the lowest dose that still worked (not the western dosing) and the results were better than I had hoped. I plan to do another round before the year is out.
  2. Tesamorelin
    1. To change my body composition. I ran it alongside Reta for 2 months and ended up not just keeping my lean mass but adding to it. Once more, I only ran 1mg rather than 2mg since I was buying at North American resale prices. Even so, it performed incredibly well; I have never been this happy with my body.
  3. SS-31 & MOTS-C
    1. Clarity and energy again. I really value being able to get through things without dragging or feeling foggy, and this pair came through. That said, I have to dilute MOTS-C to cut down on an ISR that is red, itchy, and lasts several days.
  4. KPV
    1. I apply this one locally for downstream neuropathic pain, and it does the job perfectly. So even though the injection site swells up, turns red, and itches every night, I get close to a full day with very little referred nerve pain, and more range of motion in one of my legs. I gave it a try on a whim with low expectations, and now it is something I use every day. It helps so much that I have put off my nerve blocking appointment.
After reading what you wrote, I went ahead and bought some Epitalon. DSIP hasn't stopped me from waking at 4am and being unable to fall back asleep, even when I exercised a lot the day before and felt exhausted at bedtime.

With any luck, Epitalon will work better for me.
 
DunningKruger said:

Hotlongs said:

DunningKruger said:

I also have MCAS and carry an EpiPen as a safeguard. Here is what I have experimented with (ranked from best to never touching 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
Won't touch again:

  1. DSIP
  2. PT-141
  3. Melanotan 2
Most of them sit fine with me, yet MOTS-C, GHK-Cu (better when diluted 1:5), Reta, and Tesamorelin all give me a bad response. Even KPV has set off inflammation for me at times—not always all day, but the shot spot, and occasionally elsewhere, tends to act up in the evening when histamine climbs. My guess is that local irritation, how quickly things clear, and the excipients all play a role, and endotoxin units could be part of it too.

Do you have an EpiPen ready in case your immune system turns on you someday? It might never be required, but I consider it a wise safeguard after coming across anecdotal accounts of anaphylactoid reactions following months of using certain compounds (MOTS-C appears to be a major offender here).

Now you all have me wondering about Tirzepatide for what it might do for inflammation and neuropathy. 🤔
Of the 5 you ranked highest, I'd really like to hear about your results. Can you describe what each one did for you?
Happy to share.

  1. Epitalon
    1. Sleep that restores. I woke up feeling refreshed, with clearly improved energy, mental sharpness, and memory. My dreams were intense, far more vivid than I normally get, and they stayed with me well after I got up. I went with the lowest dose that still worked (not the western dosing) and the results were better than I had hoped. I plan to do another round before the year is out.
  2. Tesamorelin
    1. To change my body composition. I ran it alongside Reta for 2 months and ended up not just keeping my lean mass but adding to it. Once more, I only ran 1mg rather than 2mg since I was buying at North American resale prices. Even so, it performed incredibly well; I have never been this happy with my body.
  3. SS-31 & MOTS-C
    1. Clarity and energy again. I really value being able to get through things without dragging or feeling foggy, and this pair came through. That said, I have to dilute MOTS-C to cut down on an ISR that is red, itchy, and lasts several days.
  4. KPV
    1. I apply this one locally for downstream neuropathic pain, and it does the job perfectly. So even though the injection site swells up, turns red, and itches every night, I get close to a full day with very little referred nerve pain, and more range of motion in one of my legs. I gave it a try on a whim with low expectations, and now it is something I use every day. It helps so much that I have put off my nerve blocking appointment.
About Epitalon — which dosage have you taken, or are you taking now? I've been looking into it, and the suggested amounts vary wildly; at times the gap is as large as 10x. You brought up 'western dosing', and I've come across that term in other places too. Frankly, it's all rather puzzling.
 
jafarrr61020 said:

DunningKruger said:

jafarrr61020 said:

DunningKruger said:

jafarrr61020 said:

DunningKruger said:

I also have MCAS and carry an EpiPen as a safeguard. Here is what I have experimented with (ranked from best to never touching 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
Won't touch again:

  1. DSIP
  2. PT-141
  3. Melanotan 2
Most of them sit fine with me, yet MOTS-C, GHK-Cu (better when diluted 1:5), Reta, and Tesamorelin all give me a bad response. Even KPV has set off inflammation for me at times—not always all day, but the shot spot, and occasionally elsewhere, tends to act up in the evening when histamine climbs. My guess is that local irritation, how quickly things clear, and the excipients all play a role, and endotoxin units could be part of it too.

Do you have an EpiPen ready in case your immune system turns on you someday? It might never be required, but I consider it a wise safeguard after coming across anecdotal accounts of anaphylactoid reactions following months of using certain compounds (MOTS-C appears to be a major offender here).

Now you all have me wondering about Tirzepatide for what it might do for inflammation and neuropathy. 🤔
Ever since I began using these stronger peptides, I've made sure my Epipen stays within reach, even at home. Back when I first started tirz, I also kept it on me, but after half a year I became fairly comfortable and now only carry it during the few times I've changed providers. That's a great point to keep in mind, thank you.

I appreciate the suggestions too! I've just begun KLOW, since I noticed 3 of its components could be helpful, and I simply hoped for the best regarding GHK-Cu. My MCAS brings a lot of skin issues, so I figured it was worth testing—if I don't have a bad reaction, it could be an extra benefit for my particular set of symptoms. DSIP has been fine for me so far; what makes it a "never again" for you? Was it a reaction, or did it just do nothing?
Slightly let down, honestly. My sleep didn't improve at all — the Oura tracker showed no shift in any of the numbers. Since I already sleep pretty well, I doubt this is something I "need." Still, no harm in trying. Epitalon, on the other hand... during that cycle I had the best sleep I've ever gotten.

With your MCAS, do your skin symptoms seem to come from both what you eat and what's around you?
Both, actually. When it's a bad reaction to food, hives show up together with the usual anaphylaxis; a milder one leaves me fatigued for a day and gives me hard red bumps on my neck and chest that stick around for a couple weeks. Seasonally, and in cycles with longer flares, I get what I think is folliculitis on my scalp, especially, and it can hurt. Since starting tirz — while still watching what I eat — the first kind of reaction has almost disappeared; hives have happened only once, after I ate one of my worst triggers by mistake. Scalp reactions have improved, though they're not gone.

DSIP has been much the same for me so far, but I'll see the cycle through before deciding. Once that's done, though, you've sold me — epitalon is next!
Oh! I really hope I didn't build it up too much — and I hope it turns out to be something you enjoy!

Yeah, those reactive lymph nodes. When you have something that sets off inflammation, do you wake up the following morning with what I call "lymph acne?" Certain fruits, vegetables, grains, or legumes will leave me with raised red papules — not real acne — clustered near the nodes in the neck and jaw, the traps, and sometimes even the ears. It's miserable. These bumps are painful and look angry, and they need a fortnight before they clear up.

And the joint pain — I won't even go there, though I'm sure you're familiar with it as well. Oof!
YES, those strange bumps that aren't acne! They're not swollen lymph nodes — they're much closer to acne, though now that you bring it up, they do show up close to lymph nodes, which I had never noticed before. Honestly, I'd far prefer real acne, since that clears up way quicker.

One non-peptide option that has helped me is cromolyn sodium. If you can get a prescription for it, try transferring it undiluted into a mini spray bottle, then mist your skin post-shower and let it air dry; when I keep up with that routine, the bumps show up at least 50% less often.
Could nasalcom/nasalcrom be effective as a topical option? The oral version costs so much.
 
Hotlongs said:

jafarrr61020 said:

DunningKruger said:

jafarrr61020 said:

DunningKruger said:

jafarrr61020 said:

DunningKruger said:

I also have MCAS and carry an EpiPen as a safeguard. Here is what I have experimented with (ranked from best to never touching 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
Won't touch again:

  1. DSIP
  2. PT-141
  3. Melanotan 2
Most of them sit fine with me, yet MOTS-C, GHK-Cu (better when diluted 1:5), Reta, and Tesamorelin all give me a bad response. Even KPV has set off inflammation for me at times—not always all day, but the shot spot, and occasionally elsewhere, tends to act up in the evening when histamine climbs. My guess is that local irritation, how quickly things clear, and the excipients all play a role, and endotoxin units could be part of it too.

Do you have an EpiPen ready in case your immune system turns on you someday? It might never be required, but I consider it a wise safeguard after coming across anecdotal accounts of anaphylactoid reactions following months of using certain compounds (MOTS-C appears to be a major offender here).

Now you all have me wondering about Tirzepatide for what it might do for inflammation and neuropathy. 🤔
Ever since I began using these stronger peptides, I've made sure my Epipen stays within reach, even at home. Back when I first started tirz, I also kept it on me, but after half a year I became fairly comfortable and now only carry it during the few times I've changed providers. That's a great point to keep in mind, thank you.

I appreciate the suggestions too! I've just begun KLOW, since I noticed 3 of its components could be helpful, and I simply hoped for the best regarding GHK-Cu. My MCAS brings a lot of skin issues, so I figured it was worth testing—if I don't have a bad reaction, it could be an extra benefit for my particular set of symptoms. DSIP has been fine for me so far; what makes it a "never again" for you? Was it a reaction, or did it just do nothing?
Slightly let down, honestly. My sleep didn't improve at all — the Oura tracker showed no shift in any of the numbers. Since I already sleep pretty well, I doubt this is something I "need." Still, no harm in trying. Epitalon, on the other hand... during that cycle I had the best sleep I've ever gotten.

With your MCAS, do your skin symptoms seem to come from both what you eat and what's around you?
Both, actually. When it's a bad reaction to food, hives show up together with the usual anaphylaxis; a milder one leaves me fatigued for a day and gives me hard red bumps on my neck and chest that stick around for a couple weeks. Seasonally, and in cycles with longer flares, I get what I think is folliculitis on my scalp, especially, and it can hurt. Since starting tirz — while still watching what I eat — the first kind of reaction has almost disappeared; hives have happened only once, after I ate one of my worst triggers by mistake. Scalp reactions have improved, though they're not gone.

DSIP has been much the same for me so far, but I'll see the cycle through before deciding. Once that's done, though, you've sold me — epitalon is next!
Oh! I really hope I didn't build it up too much — and I hope it turns out to be something you enjoy!

Yeah, those reactive lymph nodes. When you have something that sets off inflammation, do you wake up the following morning with what I call "lymph acne?" Certain fruits, vegetables, grains, or legumes will leave me with raised red papules — not real acne — clustered near the nodes in the neck and jaw, the traps, and sometimes even the ears. It's miserable. These bumps are painful and look angry, and they need a fortnight before they clear up.

And the joint pain — I won't even go there, though I'm sure you're familiar with it as well. Oof!
YES, those strange bumps that aren't acne! They're not swollen lymph nodes — they're much closer to acne, though now that you bring it up, they do show up close to lymph nodes, which I had never noticed before. Honestly, I'd far prefer real acne, since that clears up way quicker.

One non-peptide option that has helped me is cromolyn sodium. If you can get a prescription for it, try transferring it undiluted into a mini spray bottle, then mist your skin post-shower and let it air dry; when I keep up with that routine, the bumps show up at least 50% less often.
Could nasalcom/nasalcrom be effective as a topical option? The oral version costs so much.
Honestly, go ahead and test it out. My recollection isn't perfect since it's been quite some time since I began using this method, but roughly a month passed before I felt confident it was doing something. Around that point, I had about three distinct food reactions where I was certain bumps would appear, yet they didn't. So perhaps use it for several weeks, then watch closely to see if any show up?

As for the price, I completely understand... Taking it orally is no longer within my budget, but the spray gives me a strong result from just 1 ampule per week, so I've been dipping into an old stash very, very gradually.
 
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