MCAS and Peptides

[tubby]

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.

 

[DunningKruger]

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.

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.

 

[CuttingEdgeScience]

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.

 

[Hotlongs]

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.

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.

 

[Fostradamus]

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.

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.

 

[Fostradamus]

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.

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.

 

[DunningKruger]

I used a low dose of 500mcg/night and ran it until the vial was empty. Just under 20 days.

 

[Hotlongs]

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.

Do you think nasalcom/nasalcrom would work for topical treatment? The oral form is so expensive.

 

[jafarrr61020]

Do you think nasalcom/nasalcrom would work for topical treatment? The oral form is so expensive.

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.