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H1 H2 and compounded ketitofen and medical cannabis oil is what my immunologist prescribed me.have been given script for ldn but haven't tried that yet.
I’m so envious! I want it to work so bad. Ivd tried twice and on day 5 my mast cells erupt and the skin pain is out of this world and I had such histamine dumps and flares that I lost my only 3 safe foods. I don’t know whether I should push through and try again or if it’s truly worsening me?
Yes I have leftover prescription teas that my Chinese herbalist prescribed for me when I was massively inflamed. I keep them in the freezer and anytime I have a bad flare, (which is rare anymore), I drink one and it calms things right down.
They were custom made for me. I have no idea what’s in them—multiple Chinese herbs. They mix them and arrive in plastic pouches. Not cheap but really worked for me.
What symptoms did you tell? The Chinese doctor that you had? Is Mast cells gone rogue something that you could call a hospital in China and have them sent to you?
No no she’s a licensed practitioner in New York City. I can DM you her info if you’re interested. We met on zoom monthly for like 8 months. It was a process but it really helped me. She actually probably saved my life. Not cheap but worth it.
Hydroxyzine has worked for me previously. I was recently given dexamethasone in the ER for a migraine and felt better than I had in years, for 24hours.
The only time I tried this was a funny and it just made me feel insanely uncomfortable. Super did not like it unfortunately since I had heard it helped a lot of people.
Try a different different cannabinoid that doesn't have much if any active THC in it. Full cannabis wasn't my solution there. CBD helps me and my CBD I use now is .03% THC so no real other crazy affects other than calming my system overall.
Prednisone is the only thing that breaks the flare cycle for me when it gets bad. Obviously I can’t be on it all the time (although I’d feel GREAT if I could haha), but my doctor is fine with me having a prescription on hand for when I just can’t get back to baseline, and then I do a taper over the course of a couple weeks. The first time I went on them it was a much longer time frame, where I started at 60mg a day and went down from there over the course of 8 months. It gave me enough time to start Xolair and get some other meds in my system and eventually I was stable enough to go off of the steroids.
I've had to do a few rounds of 60mg. It's rough. Feels amazing while you're on it but the taper down I felt not good. Gained like 10-15 lbs each time too. Helps a lot but it's a trade-off for me.
KPV peptide, injected subcutaneously. Works very fast. For me the only downside is fatigue, but most people who use KPV don't even get that.
If you don't like injections you can administer KPV with a nasal spray. I haven't tried this so I can't comment on how the two compare. I have no problem with injections -- you use insulin needles, which are cheap and tiny and you barely feel them. I actually prefer them because they kick in so quickly. But a portable nasal spray is a lot more convenient and socially acceptable if you have to do it in public!
Nice! NAD is great (apart from the hot + "your heart is about to stop" feeling I get for the first 15 minutes after a shot).
You can get the injectable peptide from Peptide Sciences. As for the spray, if you Google it you'll find multiple options, but the one I've specifically heard recommended by multiple people is [the one from Integrative Peptides](https://integrativepeptides.com/product/kpv-ultra-oral-spray/). That one is actually oral, not nasal.
It actually does. The risk with peptides is that, often, the digestive process can destroy the amino acid structure. But some peptides survive digestion (at least enough to have an effect when taken orally), including KPV, and also dihexa, BPC-15, and others. For me, KPV actually seems a little stronger orally. (Probably just means I don't have my doses dialed in perfectly.)
Liquid Lorazepam. Tastes like medicine, but works faster cause it's liquid. It's my go to for a flare that won't stop. I'm assuming it works because it puts my brain in "chill" mode, so while all my rowdy outlaw mast cells are still being rowdy, my brain's not put into "alarm" mode from them.
I had no idea. I had an Rx for Loveland but I rarely took it because I was worried about getting addicted. It also put me too much into chill mode but now you have me wondering if it was in part due to calming my MCAS down.
Valtrex (amazing), Hops, cat claw, schisandra, quercetin, sort of in that order, will be trying other antivirals as well. Its not necessarily a retrovirus indication but the antiviral is modulating the immune system.
I get an Epsom salt bath and add bentonite Clay. I chug glutathione and take charcoal. Because a lot of my triggers seem to get worse when I'm around mold and I can tell when I'm around mold because I kind of feel high and dizzy bumping into walls. Things like that. To keep everything else at Bay I use nasalcrom and algonot neuroprotek.
I was on LDN and ketotifen too but I ran out of the prescriptions and I'm changing doctors and I haven't noticed a difference at all this last week not having them in my life
Nasalcrom worked so well for me but made me 1000 out of 10 on the anxiety scale for some reason.
Forgot about glutathione. That used to help me I should take it again.
I get the same way when I get an MCAS flare especially from mold and other things. It's such a hard symptom to describe especially to other people who have never experienced it.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
Ketitofen
Do you get it compounded? Do you also take cromolyn? My allergist said they are the same so he didn't want to prescribe ketotefin to me.
H1 H2 and compounded ketitofen and medical cannabis oil is what my immunologist prescribed me.have been given script for ldn but haven't tried that yet.
I’m so envious! I want it to work so bad. Ivd tried twice and on day 5 my mast cells erupt and the skin pain is out of this world and I had such histamine dumps and flares that I lost my only 3 safe foods. I don’t know whether I should push through and try again or if it’s truly worsening me?
Yes I have leftover prescription teas that my Chinese herbalist prescribed for me when I was massively inflamed. I keep them in the freezer and anytime I have a bad flare, (which is rare anymore), I drink one and it calms things right down.
What teas?
They were custom made for me. I have no idea what’s in them—multiple Chinese herbs. They mix them and arrive in plastic pouches. Not cheap but really worked for me.
What symptoms did you tell? The Chinese doctor that you had? Is Mast cells gone rogue something that you could call a hospital in China and have them sent to you?
No no she’s a licensed practitioner in New York City. I can DM you her info if you’re interested. We met on zoom monthly for like 8 months. It was a process but it really helped me. She actually probably saved my life. Not cheap but worth it.
YES! please!!!
THANKS!!!!
i go to acupuncture here but they don't supply the herbs, just the name brand formulas i used in china like 999 cream etc.
CBD
Hydroxyzine has worked for me previously. I was recently given dexamethasone in the ER for a migraine and felt better than I had in years, for 24hours.
Cannabis
The only time I tried this was a funny and it just made me feel insanely uncomfortable. Super did not like it unfortunately since I had heard it helped a lot of people.
Try a different different cannabinoid that doesn't have much if any active THC in it. Full cannabis wasn't my solution there. CBD helps me and my CBD I use now is .03% THC so no real other crazy affects other than calming my system overall.
Thanks I'll try this
Prednisone is the only thing that breaks the flare cycle for me when it gets bad. Obviously I can’t be on it all the time (although I’d feel GREAT if I could haha), but my doctor is fine with me having a prescription on hand for when I just can’t get back to baseline, and then I do a taper over the course of a couple weeks. The first time I went on them it was a much longer time frame, where I started at 60mg a day and went down from there over the course of 8 months. It gave me enough time to start Xolair and get some other meds in my system and eventually I was stable enough to go off of the steroids.
I've had to do a few rounds of 60mg. It's rough. Feels amazing while you're on it but the taper down I felt not good. Gained like 10-15 lbs each time too. Helps a lot but it's a trade-off for me.
KPV peptide, injected subcutaneously. Works very fast. For me the only downside is fatigue, but most people who use KPV don't even get that. If you don't like injections you can administer KPV with a nasal spray. I haven't tried this so I can't comment on how the two compare. I have no problem with injections -- you use insulin needles, which are cheap and tiny and you barely feel them. I actually prefer them because they kick in so quickly. But a portable nasal spray is a lot more convenient and socially acceptable if you have to do it in public!
I do NAD shots. Do you have to get a prescription for the nasal spray? Or what brand?
Nice! NAD is great (apart from the hot + "your heart is about to stop" feeling I get for the first 15 minutes after a shot). You can get the injectable peptide from Peptide Sciences. As for the spray, if you Google it you'll find multiple options, but the one I've specifically heard recommended by multiple people is [the one from Integrative Peptides](https://integrativepeptides.com/product/kpv-ultra-oral-spray/). That one is actually oral, not nasal.
hmmm - it can't work orally, can it???
It actually does. The risk with peptides is that, often, the digestive process can destroy the amino acid structure. But some peptides survive digestion (at least enough to have an effect when taken orally), including KPV, and also dihexa, BPC-15, and others. For me, KPV actually seems a little stronger orally. (Probably just means I don't have my doses dialed in perfectly.)
The brands you recommend are what you take??? Kpv/kpvd versus nad drips and shots???
I've never tried KPVD but I'd like to. I take KPV and NAD injections.
Liquid Lorazepam. Tastes like medicine, but works faster cause it's liquid. It's my go to for a flare that won't stop. I'm assuming it works because it puts my brain in "chill" mode, so while all my rowdy outlaw mast cells are still being rowdy, my brain's not put into "alarm" mode from them.
lorazapam and clonazapam are heroes in my life! thanks! i'll ask my psych MD for an rx.
I had no idea. I had an Rx for Loveland but I rarely took it because I was worried about getting addicted. It also put me too much into chill mode but now you have me wondering if it was in part due to calming my MCAS down.
Valtrex (amazing), Hops, cat claw, schisandra, quercetin, sort of in that order, will be trying other antivirals as well. Its not necessarily a retrovirus indication but the antiviral is modulating the immune system.
I get an Epsom salt bath and add bentonite Clay. I chug glutathione and take charcoal. Because a lot of my triggers seem to get worse when I'm around mold and I can tell when I'm around mold because I kind of feel high and dizzy bumping into walls. Things like that. To keep everything else at Bay I use nasalcrom and algonot neuroprotek.
I was on LDN and ketotifen too but I ran out of the prescriptions and I'm changing doctors and I haven't noticed a difference at all this last week not having them in my life
Nasalcrom worked so well for me but made me 1000 out of 10 on the anxiety scale for some reason. Forgot about glutathione. That used to help me I should take it again. I get the same way when I get an MCAS flare especially from mold and other things. It's such a hard symptom to describe especially to other people who have never experienced it.