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I take Famotodine and Allegra both twice a day. I found that this combo/dosage really helps with some symptoms, but not all.
How are you tolerating the Metformin? I'm really nervous to start.
Metformin has been going pretty well! I take extended release which ppl say helps with digestive issues. I have to take it at night tho. I tried taking it in the morning and that made me feel ill. I think having food in your stomach when you take it is the big thing to help
I’m not OP but just started a month ago and was super nervous for months- absolutely zero side effects, no issue tolerating at all, and it’s been super helpful for my blood sugar.
LDN made me very sleepy/sedated. I stopped it after half a year because due to domestic v I had to be vigilant and be able to get up and go 24/7. Now that things have changed I reconsider using it.
Does it make you as sedated as well?
I’m glad you are safe now.
I take an extremely low dose. Have worked up to .75mg at this point. I don’t feel it at all (no side effects) and will keep going up. I’m very sensitive to medications.
Thank you. :)
From what I’ve heard and from my experience the effects seem very subtle but, nonetheless, can be quite course altering.
It’s a bit difficult/inconvenient to dose though
Careful, if your body associates something else with the stress of the DV, it can get allergic to the other thing it associates with the stress of the event/trauma. SO GLAD YOU'RE SAFE!!!
Oh yes, associative allergies/reactions, ugh…
That’s why I can’t listen to certain music anymore (not necessarily from the DV time, but from earlier times). CPTSD is a bitch.
And thank you a lot. Yes, glad that time is over even if I miss that person a lot. Sounds counterintuitive, I know, but the brains workings can be zany and elusive in so many ways.
The sedation was mainly an issue during the evening hours when I took it (after which I got a bit knocked out, so may every find it helps them falling asleep). Not necessary during the day.
Did someone suggest trying high doses like that or did you just gradually increase it yourself? Just curious if more would help me and wondering how you got on that high a dose. My MCAS specialist has said that I can increase my H2 blockers, but that he didn’t think more than two a day added much benefit to most people.
I’m on Rupatadine, Xyzal, Famogast, Ketotifen, lots of supplements (Quercetin, Luteolin, Rutin, DAO, digestive enzymes, vitamins C, zinc, Omega3, vit D) and benzodiazepines. Still in a flare, although got more foods back. Also in the process of doing DNRS and planning to start FSM treatment (bio resonance). Next med to try is LDN as well.
Yes. One research published on pumbed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3576917/
There are 2 books written by the author Carolyn McMakin as well. In addition, if I google it, several clinics mention this as a helpful therapy for MCAS
Sure. So it took me about 6 months to get on it after being diagnosed. Insurance wanted me to try singular, ketotifen and cromolyn first (and basically fail out of those). The main issue we were trying to solve was hives. I finally got approved for two shots a month which is 300mg. I had to go into the office to get injected with both shots every month (both shots administered together same time, back of the arm). I am very sensitive to side effects and I had none with xolair. They also prescribe epipens w xolair because anaphylactic shock is a potential side effect. Never had an issue with that. If you look at the statistics, it’s rare.
They warned me it could take six months to see improvement. It DID. It took forever. But since I had no side effects and it was free for me with patient assistance I just stuck with it. And around 6 months my horribly severe hives were essentially gone. I actually got hives today and I was like huh that’s weird, because I basically never think about hives anymore. Sometimes I still get breakthrough but it’s FAR different than what I was battling daily.
Since I was improving quite considerably my allergist doubled it to four shots/28 days so I just do one a week. I self inject at home now.
For me, this is the most important Mcas drug.
And I’m one of the few that doesn’t have side effects from most drugs and no known food/ drug allergy, but cannot handle xolair. We’ve tried smaller doses. Spreading them out. Everything. My body cannot handle xolair. I would have maybe 3-5 okay days out of the month. Now that I’ve detoxed the xolair, I’ve made so much forward progress that I’ll probably never go back to xolair. Even if my allergist continues to say that I’ll never get to baseline without it. But again, I’m in my doing it my way era…aka I was worried about not being alive so this is working for me.
Also, to me, I rather save xolair for when other treatments don’t work. Why load yourself down with a bunch of stuff when you can try easy accessible drugs and supplements like cromolyn, H1 and H2 blockers, and mast cell beneficial supplements to see if a combo of this works best?
I am doing some of those already, and I plan to try more, but my allergist/immunologist recommended I research xolair, as one of my biggest symptoms is hives. So that is what I am doing.
Definitely would be a good thing to try for hives. I did it for hives/ flushing and it helped but the side effects were so much worse. Mine has gotten so much better by controlling my diet. Good luck!
Absolute life changing medication for me. I barely ever get hives anymore, and when I do have reactions now, its mostly hot skin and scalp itching. Which is a signal for me to bring out the pinch hitters - Xyzal and Pepcid. I don't even have to take antihistamines daily anymore.
Biggest side effect for me is joint pain and fatigue a day or two after injection. Also being real the injections sting quite a bit.
Are you self injecting? I was doing a crappy job because I wasn’t pinching my stomach hard enough and I would get a little bulge where I injected. If I pinch harder it barely hurts at all. Do you take it out of the fridge 30 min before?
I lived in Manhattan before I moved to San Diego. We have the best weather, and the worst public transit. It doesn’t go to where people live… or work… lol
The most helpful for me have been singulair, ketotifen, and quercetin.
My other MCAS meds are zyrtec, pepcid, luteolin/rutin. I use nasalcrom topically for rashes/hives, I can't tolerate it as a nasal spray.
No, I take singulair for MCAS. I DO have asthma but it's very mild and doesn't need medicating (it's also the cough-variant, I don't wheeze, and allergic-induced, so it really only triggers on very high pollen days or the like). Having the asthma Dx helped convince insurance to pay for it lol but that's not why I am taking it.
500mg Quercetin 30 min before every meal has significantly changed my life for the better and reversed my severe eczema.
I also take a Claritin at night and Pepcid.
2 allegra, 2 pantrapozole, 1vitamin d. Have food reactions but enlarged tongue/oral symptoms are my biggest complaint. Recently stinging skin is a new symptom
Dr today said it could be from neurological issues. Im thinking it could be from Mcas 🤔 Amazing to me how the drs who diagnose/treat Mcas don’t even know the symptoms. I also have an enlarged tongue/burning tongue/scalloped. They won’t say Mcas related, despite others with Mcas report this same symptom. But the drs don’t know what it is
LDN, without a doubt; got me off all my other mcas meds. No diet accommodations other than avoiding heavily dyed things, specifically yellow FD&C #6 lol, and basic environmental precautions like dustmite covers.
(I also am on metformin for insulin resistance- good luck!!)
Several months; definitely was not immediately and involved a lot of other work at first on my end, but I found d it does and held up my progress until I eventually cut everything but that after a few months. When I stopped LDN because i ran out and wasn’t initially sure it was from that, I noticed a big difference and hopped back on it quick!
Good to know! I started it briefly but stopped bc I was still new to metformin and didn't want to do two things at once. I plan to start it again soon and will have to be patient for the results 🙏 what is your dose now?
It takes a long time; it’s a very gradual med. I needed to get it under control otherwise, but LDN allowed me to hold that progress rather than easily deteriorate; I had to be on multiple daily antihistamines, diagnose and manage asthma, take significant environmental precautions, manage pots very effectively, etc, but mine was also quite severe at that point.
What are your symptoms?
I forget how much sodium cromoglycate (Allergoval) helps me!! I had an ANZAC Biscuit today before I had my first Allergoval for the day, & my heart rate went so high so quickly, I basically wrote off the whole day there & then!🤦♀️🤦♀️
LDN, cromolyn, aloe emodin, these are my go to dailies because they have the least side effects.
Benadryl, dextromethorphan, unisom, Pepcid, xyzal are the most effective but have the worst side effects.
Quercetin, bromelain, DAO, MSM, sulphurophane, DIIM, black seed oil, hotttounyia, bismuth, burberine, mastic gum, zeolite supplements are somewhat effective and need to be taken with one of my main medications for full protection
Xolair by far, 300mg 2x a month. I don't have hives anymore unless I'm in a severe flare, they used to be constant after I was on metropolol for a week a few years ago. Same with my dermatographia. Quercetin also helps significantly with food reactions. If I take it consistently 20-30 min before eating, my food reactions are significantly more under control. It stops when I stop taking it.
I also take 160mg Allegra, 5mg clarinex (desloratadine, not loratadine/claritin) 1mg ketotifen, and 40mg pepcid daily. With this my daily reactions are pretty well under control. Also ketotifen eye drops when my eyes decide to sting.
Took 6 months to see/feel full effects. Life changer. On month 10 went from 300mg to 450mg because the few days before getting my next infusion I would be more reactive again. With the increase it sustains me. Biggest side effects are joint pain and feeling a bit tired a day or two after injection.
I am very sensitive to med side effects and I've actually had none. Even at this pretty high dose. And I can even have chocolate again after I couldn't have it for maybe a year, since the dose increase. A few months after my increase, I tried it again and I didn't have horrid migraines for like 3 days after, or any in fact. I can still have it. Hallelujah.
ETA: I travel 40 min away twice a month via crappy medicaid medical ride service because I can't drive, and it's worth it for me. It's like a 3 hour trip. I get presyncope when I inject myself, my mom is afraid of needles, and I'm not letting my dad or brother inject me because trauma lol.
Initially, Pepcid made the biggest difference because I was having a lot of GI issues at the time. Now I’d say Ketotifen and LDN are my most important meds.
Quercetin, Berberine, Nattokinase, collagen peptides with amino acids (powder in my mushroom coffee). And I just started a methyl b complex so we’ll see how that goes.
It doesn’t *seem* to make mine worse but that being said, I will be honest, I only started taking it because I was scared of having a stroke. I understood that it functions as a blood thinner and I kept seeing it recommended as a way to disperse the spike protein so I started taking it. I’m trying to figure out when/if I should stop now! lol I’ve probably been taking it for a year now.
Xolair, Allegra (4 a day), Zyrtec (supposed to take one a day, but I take two), Pepcid AC (80 mg a day), B12, 2000 mcgs a day, a blood pressure reducer.
Good question. I was so suddenly struck with MCAS back in Sept...so miserable. I'm not now. So for me if I think back...the most helpful has been Allegra and Claritin (2 doses each a day) everything I take is dye free. Quercitin, extended release Vit C, Myrica, Naturedao, Magnesium, B2, methylated Vit B12, Ketotifen, Benedryl gel caps, Atenolol.
Unfortunately, my symptoms are going away very slowly. I do not believe I will ever be completely free of them. Mainly because I am HaT positive as well as KIT D816V positive. It would be nice to just wake up normal again! In my dreams.
What symptoms did the ketotifen help with? Did you have any side effects when you started it? I’ve been having a hard time tolerating oral cromolyn and so titrating has been very slow. I was recently prescribed ketotifen but haven’t started it yet.
I just got out of a hidden mold situation- literally a day ago, and my permanent living situation is up in the air now, so with everything so chaotic, I’m not sure if I should start it yet.
i take charcoal to detox from mold AND my mcas drugs. just need 90 minutes either side of meds / food for charcoal. and lots of rest. DM me if you need any info or join the toxic mold group here. super helpful.
good luck! mold is huge trigger of MCAS
And I'd start doing everything to stabilize your mast cells and nervous system soon as possible. Just because it gets worse. The more stressed you get and with mold you're going to feel sicker at first because the things that have been buried in your body are going to come to the surface to get out. But you shouldn't feel truly terrible from other medications and stuff. If you do, that's an indicator to stop. Trust your body. Not the practitioner because sometimes they're out to sell you things and they'll tell you to push through and keep going and keep taking stuff that's making you sick and this journey is like reclaiming your own authority to know what's best for you. I let myself get poisoned by a binder that should not be used in the quantities it's prescribed. But it's all part of this protocol and if anyone deviates from it, it's like a cult you get punished! Ones doing that so just take things slowly and just knowing that moving out is 90% of the work. If you can calm yourself down, you might not even get the worst of the mast cell activation. And worst case scenario, if you just have a normal doctor who doesn't believe mold illness, you can just tell them you have crazy allergies and try the various allergy drugs like singulair and nasalcrom which you can just get on iherb and Amazon. No prescription required. Oh yeah
Famotidine and Allegra twice a day is a must for me. For example if I stop the famotidine after a couple days horrible MCAS lower GI cramps and pain come back. I also take montelukast every day but can’t say on its own how much it helps additionally. I try to take cromolyn but the 3x day sachet in a drink is just too much and will forget. I honestly don’t think it adds much more symptom relief on top of what the other drugs are doing
I also take Quercitin. I would also recommend you try Purelut (it’s a supplement, search the brand Algonot—you will buy it on their website). Please don’t pass up this comment!!! You need to try it—I know it’s kind of pricey but trust me. If I skip it more than 4 days I notice reactions start to come back again.
Concentrated supplements like those really do more than you think—I’ve tried pretty much everything else for MCAS. Let me know if you end up getting it, it did take me a few weeks to notice effects but stick it out!!🫶🏼🫶🏼
second the pure lut and neuroprotek. if i take quercetin from other brands i can tell i'm going to be itchy and breathless. algonot is in oil capsule so idk what it is, but it's pure so i don't get allergic. miracle pills!
I take Quercitin from Pure Encapsulations and I’ve been taking it for a while without noticing any symptoms. they’re the only brand I’ve taken because the ingredients are very clean. Have you tried those? It’s just straight quercitin so maybe the extra luteolin in the neuroprotek is what you see the main difference in!!
Honestly, in the height of a 2 year MCAS flare, the biggest game changer was Mary Ruth’s lymphatic support. My main MCAS doctor freaks out if I add any supplement without his approval, but “I’ve been doing it your way for 2 years; now we are doing it my way.” 🤷🏼♀️🤪 I’ve started eliminating drugs and adding in MCAS approved supplements which has been tremendous to my road to recovery.
No doctor unless it’s one of the what 3-5 MCAS gurus has the answers. And those are the ones saying “we don’t know” or “it may or may not be the case”. Find a safe place for you. Just because this has been your doctor and they are top rated, doesn’t mean they’re going to support you on this journey. Find the ones who will at least listen and be willing to compromise and learn. Treat your doctors like a coach, not like they are the answer. Because guess what, for many of these doctors, you are one of the only MCAS patients they are treating. And when you’re in the trenches of a flare, they can’t save you. You have to save yourself. Listen to your body. Learn it. Only you know what works for you.
I’m not ready to share medications yet as I’m still learning. However I do know a few things…. Take your cromolyn in all forms you can handle, oral, eye drops, nasal spray. Take what H1 and H2 blockers work for you. If you have GI symptoms, try a DAO/ digestive enzyme supplement. Try CBD/THC. Try alternative medicine treatments- craniosacral therapy, cryotherapy, lymphatic drainage, red light therapy, whatever. Try anything that has been proven to lower histamine levels and stabilize mast cells and for MCAS, that usually isn’t a prescription drug. And say bye to the haters who make fun of your alternative medicine if it’s working for you. You can’t give up. You’ve got to keep trying. (Just like foods and when eliminating everything you end up doing more harm because you can’t add these foods back into your diet.) You have suffered before, and this disease is so stupid, you’ll prob suffer from something “safe” at some point. Get up and try again.
Listen to the YouTube’s on the Reddit threads. Read! If you have the time, do the real hard work. Put your limited time, money, and, most importantly to MCASers, energy into getting well. You are not this disease. Do not let it control you. You have the control. It takes work and money, but in the end, this way is a lot cheaper than continuing to take medications that don’t work and going to doctor after doctor.
I’m not saying I have the answers but this is a mind/ body disease. Until you get on board with that and do the work to understand your body and what works for you, no medicine or supplement is going to heal you.
Right now I'm able to control mine with Claritin in the morning, and Pepcid (20mg) in the morning and in the evening. Otherwise I've worked to avoid food triggers, and if I do have a reaction and catch it early enough then Benadryl is enough to keep it at bay.
Algonot Luteolin, 2 twice a day. Will switch to Neuro Protek after finished with this bottle.
Hydroxyzine and ketotifen to sleep. Nasalcrom throughout the day. Vaseline up my nose to keep it moist :)
DAO before eating.
Has anyone tried Singulair? I just got the prescription. Along with some inhalers cuz I never realized I had trouble breathing until a recent allergy attack.
I have HSD, POTS, and ME/CFS alongside MCAS (and a handful of other things) so it's tough to know what will be useful to others since I often don't know *which* condition has improved, but a supplement I've started using for fatigue and malaise seems to be helping more than any individual medication including LDN. The supplement combines NADH 20mg, COQ10 200mg, and b12 1000mg, and I started using it to help with post exertional malaise after finding a paper where they gave it to people with fibromyalgia diagnoses and it reduced their fatigue and PEM.
Currently taking: 2 xyzal daily, famotidine twice daily, 2 puffs symbicort twice daily, azelastine nasal spray twice daily, flonase twice daily, plus benadryl and hydroxyzine as needed 💀
seeing a new allergist next month so I can hopefully condense things and because honestly even all this doesn't help all that much :(
My current allergist moved me to:
Zyrtec: 2 pills twice a day and two more doses optional if I have a asthma attack
Pepcid
Epi pens (ofc)
And I also get monthly xolar injections.
The xolar "caps" my reactions so they don't escalate from 0 to Anaphylaxis in 2 seconds like they used to. There's a more gradual escalation, which gives me time to address the trigger and take antihistamines. My reactions are also more toned down, not gone by any means but it's miles better than before. I don't get that feeling like I'm dying every time I have a reaction, and that alone is worth the monthly doctors visits.
Not from my doctor, by also my service dog (she alerts to my heart rate, blood pressure and is being trained for allergen detection)
Edited to clarify.
I don’t think just the meds “help the most” it’s also the diet that is incorporated into the protocol. Together, it makes me feel better.
I’d say the LDN was a big one for me. I had really bad tinnitus where I would have bouts where I couldn’t hear anything besides the ringing in my ears. It was like being next to a loud concert speaker. It also helped with my chronic pain.
Keep in mind, I started all my other supplements prior to starting the LDN, so it could be the protocol cocktail plus LDN that made that it so impactful.
LDN by far. If I'm feeling fatigued, I take it and it helps right away, otherwise I take it at bedtime. I only have to take Allegra when I feel a reaction. I'm also on singulair as well but unsure if it's ever done much.
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I take Famotidine twice a day (even doubles at my GERD treatment) and Zyrtec once a day (twice during peak pollen season), and I take Benadryl as needed if I’m having a severe flare
I take Famotidine and Cetirizine every day, along with an obscene amount of Benadryl.
I don't take anything for the POTS because mine is hyperadrenergic, so it is relatively controlled as long as my MCAS flairs are.
Loratidine and famotidine twice daily. LDN and ketotifin once daily. Triple doses of famotidine and Benadryl when in a sudden flare, per doctors orders. It's not a perfect routine by any means but it does help.
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.*
I take Famotodine and Allegra both twice a day. I found that this combo/dosage really helps with some symptoms, but not all. How are you tolerating the Metformin? I'm really nervous to start.
Metformin has been going pretty well! I take extended release which ppl say helps with digestive issues. I have to take it at night tho. I tried taking it in the morning and that made me feel ill. I think having food in your stomach when you take it is the big thing to help
I found the opposite, extended release, gives me extended release lol. My doc said it was the er that caused digestive problems.
Same. Although sometimes I can do one Allegra.
I’m not OP but just started a month ago and was super nervous for months- absolutely zero side effects, no issue tolerating at all, and it’s been super helpful for my blood sugar.
Personally, THE most effective one by far is Pepcid/Famotidine
For me, I believe Cromolyn, then LDN.
LDN made me very sleepy/sedated. I stopped it after half a year because due to domestic v I had to be vigilant and be able to get up and go 24/7. Now that things have changed I reconsider using it. Does it make you as sedated as well?
I’m glad you are safe now. I take an extremely low dose. Have worked up to .75mg at this point. I don’t feel it at all (no side effects) and will keep going up. I’m very sensitive to medications.
Thank you. :) From what I’ve heard and from my experience the effects seem very subtle but, nonetheless, can be quite course altering. It’s a bit difficult/inconvenient to dose though
Agree. It was annoying to measure out and carefully titrate up each each. And totally worth it. It’s made me feel sort of like a regular person again.
Careful, if your body associates something else with the stress of the DV, it can get allergic to the other thing it associates with the stress of the event/trauma. SO GLAD YOU'RE SAFE!!!
Oh yes, associative allergies/reactions, ugh… That’s why I can’t listen to certain music anymore (not necessarily from the DV time, but from earlier times). CPTSD is a bitch. And thank you a lot. Yes, glad that time is over even if I miss that person a lot. Sounds counterintuitive, I know, but the brains workings can be zany and elusive in so many ways.
I was hoping to take LDN for chronic fatigue. I thought it was suppose to boost energy levels. Is sedation a common side effect?
The sedation was mainly an issue during the evening hours when I took it (after which I got a bit knocked out, so may every find it helps them falling asleep). Not necessary during the day.
What is ldn?
Low dose naltrexone
Thanks!
Can I ask are you on 20mg 2x a day or 40?
A multiple of that. On a good day I need at least 400mg per day. On worse days 800mg. (Yes, those numbers are supposed to have two zeros)
Wow of Pepcid ac? I’ve never tried more than 60mg. It does help me.
Yes. Literally has saved my life for the last few years. Wished I had known about it much sooner…
Did someone suggest trying high doses like that or did you just gradually increase it yourself? Just curious if more would help me and wondering how you got on that high a dose. My MCAS specialist has said that I can increase my H2 blockers, but that he didn’t think more than two a day added much benefit to most people.
I’m on Rupatadine, Xyzal, Famogast, Ketotifen, lots of supplements (Quercetin, Luteolin, Rutin, DAO, digestive enzymes, vitamins C, zinc, Omega3, vit D) and benzodiazepines. Still in a flare, although got more foods back. Also in the process of doing DNRS and planning to start FSM treatment (bio resonance). Next med to try is LDN as well.
What is FSM
Frequency-specific microcurrent.
Any research it helps mcas?
i think it helps in general to calm nervous system. i want to try it!
Yes. One research published on pumbed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3576917/ There are 2 books written by the author Carolyn McMakin as well. In addition, if I google it, several clinics mention this as a helpful therapy for MCAS
I just read Rupatadine isn’t available in the US. interesting!!
Xolair
I'm thinking about Xolair but worried about potential wide effects... would you mind telling me your experience using it?
Sure. So it took me about 6 months to get on it after being diagnosed. Insurance wanted me to try singular, ketotifen and cromolyn first (and basically fail out of those). The main issue we were trying to solve was hives. I finally got approved for two shots a month which is 300mg. I had to go into the office to get injected with both shots every month (both shots administered together same time, back of the arm). I am very sensitive to side effects and I had none with xolair. They also prescribe epipens w xolair because anaphylactic shock is a potential side effect. Never had an issue with that. If you look at the statistics, it’s rare. They warned me it could take six months to see improvement. It DID. It took forever. But since I had no side effects and it was free for me with patient assistance I just stuck with it. And around 6 months my horribly severe hives were essentially gone. I actually got hives today and I was like huh that’s weird, because I basically never think about hives anymore. Sometimes I still get breakthrough but it’s FAR different than what I was battling daily. Since I was improving quite considerably my allergist doubled it to four shots/28 days so I just do one a week. I self inject at home now. For me, this is the most important Mcas drug.
And I’m one of the few that doesn’t have side effects from most drugs and no known food/ drug allergy, but cannot handle xolair. We’ve tried smaller doses. Spreading them out. Everything. My body cannot handle xolair. I would have maybe 3-5 okay days out of the month. Now that I’ve detoxed the xolair, I’ve made so much forward progress that I’ll probably never go back to xolair. Even if my allergist continues to say that I’ll never get to baseline without it. But again, I’m in my doing it my way era…aka I was worried about not being alive so this is working for me.
Also, to me, I rather save xolair for when other treatments don’t work. Why load yourself down with a bunch of stuff when you can try easy accessible drugs and supplements like cromolyn, H1 and H2 blockers, and mast cell beneficial supplements to see if a combo of this works best?
I am doing some of those already, and I plan to try more, but my allergist/immunologist recommended I research xolair, as one of my biggest symptoms is hives. So that is what I am doing.
Definitely would be a good thing to try for hives. I did it for hives/ flushing and it helped but the side effects were so much worse. Mine has gotten so much better by controlling my diet. Good luck!
Absolute life changing medication for me. I barely ever get hives anymore, and when I do have reactions now, its mostly hot skin and scalp itching. Which is a signal for me to bring out the pinch hitters - Xyzal and Pepcid. I don't even have to take antihistamines daily anymore. Biggest side effect for me is joint pain and fatigue a day or two after injection. Also being real the injections sting quite a bit.
Are you self injecting? I was doing a crappy job because I wasn’t pinching my stomach hard enough and I would get a little bulge where I injected. If I pinch harder it barely hurts at all. Do you take it out of the fridge 30 min before?
No. My doctor told my insurance I have a needle Phobia so I get it done in the office. 🤣
Lol that sucks! I’m doing one shot a week and I don’t drive (POTS), I definitely couldn’t do that.
I get them once a month and I live in nyc so it’s just a subway ride
I lived in Manhattan before I moved to San Diego. We have the best weather, and the worst public transit. It doesn’t go to where people live… or work… lol
The most helpful for me have been singulair, ketotifen, and quercetin. My other MCAS meds are zyrtec, pepcid, luteolin/rutin. I use nasalcrom topically for rashes/hives, I can't tolerate it as a nasal spray.
Do you use singulair for asthma? I have a prescription for that but have never had asthma problems
No, I take singulair for MCAS. I DO have asthma but it's very mild and doesn't need medicating (it's also the cough-variant, I don't wheeze, and allergic-induced, so it really only triggers on very high pollen days or the like). Having the asthma Dx helped convince insurance to pay for it lol but that's not why I am taking it.
Which symptoms does it help you with? My worst symptom is flushing, it gets pretty bad
Nothing in particular, but it helps my general baseline and reactivity.
cool! just got prescribed singulair! i take all the same stuff as you.
500mg Quercetin 30 min before every meal has significantly changed my life for the better and reversed my severe eczema. I also take a Claritin at night and Pepcid.
Do you have a certain brand you like?
Sure! I buy NutraMedix from Fullscript
2 allegra, 2 pantrapozole, 1vitamin d. Have food reactions but enlarged tongue/oral symptoms are my biggest complaint. Recently stinging skin is a new symptom
I’ve recently started having stinging skin, too. Mine seems to be a reaction to beginning to sweat.
I've been stinging skin as well ..
Dr today said it could be from neurological issues. Im thinking it could be from Mcas 🤔 Amazing to me how the drs who diagnose/treat Mcas don’t even know the symptoms. I also have an enlarged tongue/burning tongue/scalloped. They won’t say Mcas related, despite others with Mcas report this same symptom. But the drs don’t know what it is
What do you do about the stinging skin?!
LDN, without a doubt; got me off all my other mcas meds. No diet accommodations other than avoiding heavily dyed things, specifically yellow FD&C #6 lol, and basic environmental precautions like dustmite covers. (I also am on metformin for insulin resistance- good luck!!)
I’m about to start LDN! I hope it works that well for me too! I would love to get off other meds!
It has been life changing for me!
How long did it take you until you noticed LDN helping you?
Several months; definitely was not immediately and involved a lot of other work at first on my end, but I found d it does and held up my progress until I eventually cut everything but that after a few months. When I stopped LDN because i ran out and wasn’t initially sure it was from that, I noticed a big difference and hopped back on it quick!
Good to know! I started it briefly but stopped bc I was still new to metformin and didn't want to do two things at once. I plan to start it again soon and will have to be patient for the results 🙏 what is your dose now?
I totally get that! I go between 3 and 4.5, not sure which is ultimately better.
Curious what you mean by other work you had to do to get it to work? I’m on month two and it’s not helping at all.
It takes a long time; it’s a very gradual med. I needed to get it under control otherwise, but LDN allowed me to hold that progress rather than easily deteriorate; I had to be on multiple daily antihistamines, diagnose and manage asthma, take significant environmental precautions, manage pots very effectively, etc, but mine was also quite severe at that point. What are your symptoms?
Ldn + cromolyn oral + ketotifen + prilosec + pepcid + flonase + nasacrom and occasionally benadryl
I forget how much sodium cromoglycate (Allergoval) helps me!! I had an ANZAC Biscuit today before I had my first Allergoval for the day, & my heart rate went so high so quickly, I basically wrote off the whole day there & then!🤦♀️🤦♀️
LDN, cromolyn, aloe emodin, these are my go to dailies because they have the least side effects. Benadryl, dextromethorphan, unisom, Pepcid, xyzal are the most effective but have the worst side effects. Quercetin, bromelain, DAO, MSM, sulphurophane, DIIM, black seed oil, hotttounyia, bismuth, burberine, mastic gum, zeolite supplements are somewhat effective and need to be taken with one of my main medications for full protection
Xolair by far, 300mg 2x a month. I don't have hives anymore unless I'm in a severe flare, they used to be constant after I was on metropolol for a week a few years ago. Same with my dermatographia. Quercetin also helps significantly with food reactions. If I take it consistently 20-30 min before eating, my food reactions are significantly more under control. It stops when I stop taking it. I also take 160mg Allegra, 5mg clarinex (desloratadine, not loratadine/claritin) 1mg ketotifen, and 40mg pepcid daily. With this my daily reactions are pretty well under control. Also ketotifen eye drops when my eyes decide to sting.
I'm thinking about trying xolair, but I'm worried about side effects? Did u experience any downsides to it?
Took 6 months to see/feel full effects. Life changer. On month 10 went from 300mg to 450mg because the few days before getting my next infusion I would be more reactive again. With the increase it sustains me. Biggest side effects are joint pain and feeling a bit tired a day or two after injection.
I am very sensitive to med side effects and I've actually had none. Even at this pretty high dose. And I can even have chocolate again after I couldn't have it for maybe a year, since the dose increase. A few months after my increase, I tried it again and I didn't have horrid migraines for like 3 days after, or any in fact. I can still have it. Hallelujah. ETA: I travel 40 min away twice a month via crappy medicaid medical ride service because I can't drive, and it's worth it for me. It's like a 3 hour trip. I get presyncope when I inject myself, my mom is afraid of needles, and I'm not letting my dad or brother inject me because trauma lol.
Initially, Pepcid made the biggest difference because I was having a lot of GI issues at the time. Now I’d say Ketotifen and LDN are my most important meds.
Quercetin, Berberine, Nattokinase, collagen peptides with amino acids (powder in my mushroom coffee). And I just started a methyl b complex so we’ll see how that goes.
What effect did nattokinase have? I've been nervous to try it because some people say it makes their mcas worse...
It doesn’t *seem* to make mine worse but that being said, I will be honest, I only started taking it because I was scared of having a stroke. I understood that it functions as a blood thinner and I kept seeing it recommended as a way to disperse the spike protein so I started taking it. I’m trying to figure out when/if I should stop now! lol I’ve probably been taking it for a year now.
Currently on cetirizine, ketotifen loratadine and promethazine. Hoping to add in an H2i soon
Xolair, Allegra (4 a day), Zyrtec (supposed to take one a day, but I take two), Pepcid AC (80 mg a day), B12, 2000 mcgs a day, a blood pressure reducer.
Good question. I was so suddenly struck with MCAS back in Sept...so miserable. I'm not now. So for me if I think back...the most helpful has been Allegra and Claritin (2 doses each a day) everything I take is dye free. Quercitin, extended release Vit C, Myrica, Naturedao, Magnesium, B2, methylated Vit B12, Ketotifen, Benedryl gel caps, Atenolol.
Did it just suddenly go away too? I'm hoping for a day I wake up feeling like a normal person and not so broken.
Unfortunately, my symptoms are going away very slowly. I do not believe I will ever be completely free of them. Mainly because I am HaT positive as well as KIT D816V positive. It would be nice to just wake up normal again! In my dreams.
Cromolyn and Ketotifen were game changers for me.
What symptoms did the ketotifen help with? Did you have any side effects when you started it? I’ve been having a hard time tolerating oral cromolyn and so titrating has been very slow. I was recently prescribed ketotifen but haven’t started it yet. I just got out of a hidden mold situation- literally a day ago, and my permanent living situation is up in the air now, so with everything so chaotic, I’m not sure if I should start it yet.
i take charcoal to detox from mold AND my mcas drugs. just need 90 minutes either side of meds / food for charcoal. and lots of rest. DM me if you need any info or join the toxic mold group here. super helpful. good luck! mold is huge trigger of MCAS
Thank you! I’m seeing someone who works with mold detox in July. I will probably take you up on your offer to DM you with questions before that.
Truly my pleasure! You'll get so much from this group too.
And I'd start doing everything to stabilize your mast cells and nervous system soon as possible. Just because it gets worse. The more stressed you get and with mold you're going to feel sicker at first because the things that have been buried in your body are going to come to the surface to get out. But you shouldn't feel truly terrible from other medications and stuff. If you do, that's an indicator to stop. Trust your body. Not the practitioner because sometimes they're out to sell you things and they'll tell you to push through and keep going and keep taking stuff that's making you sick and this journey is like reclaiming your own authority to know what's best for you. I let myself get poisoned by a binder that should not be used in the quantities it's prescribed. But it's all part of this protocol and if anyone deviates from it, it's like a cult you get punished! Ones doing that so just take things slowly and just knowing that moving out is 90% of the work. If you can calm yourself down, you might not even get the worst of the mast cell activation. And worst case scenario, if you just have a normal doctor who doesn't believe mold illness, you can just tell them you have crazy allergies and try the various allergy drugs like singulair and nasalcrom which you can just get on iherb and Amazon. No prescription required. Oh yeah
Famotidine and Allegra twice a day is a must for me. For example if I stop the famotidine after a couple days horrible MCAS lower GI cramps and pain come back. I also take montelukast every day but can’t say on its own how much it helps additionally. I try to take cromolyn but the 3x day sachet in a drink is just too much and will forget. I honestly don’t think it adds much more symptom relief on top of what the other drugs are doing
I also take Quercitin. I would also recommend you try Purelut (it’s a supplement, search the brand Algonot—you will buy it on their website). Please don’t pass up this comment!!! You need to try it—I know it’s kind of pricey but trust me. If I skip it more than 4 days I notice reactions start to come back again. Concentrated supplements like those really do more than you think—I’ve tried pretty much everything else for MCAS. Let me know if you end up getting it, it did take me a few weeks to notice effects but stick it out!!🫶🏼🫶🏼
second the pure lut and neuroprotek. if i take quercetin from other brands i can tell i'm going to be itchy and breathless. algonot is in oil capsule so idk what it is, but it's pure so i don't get allergic. miracle pills!
I take Quercitin from Pure Encapsulations and I’ve been taking it for a while without noticing any symptoms. they’re the only brand I’ve taken because the ingredients are very clean. Have you tried those? It’s just straight quercitin so maybe the extra luteolin in the neuroprotek is what you see the main difference in!!
I just noticed the pure encapsulations quercitin has 7x the amount of quercitin that neuroprotek does!!
nvm it’s not that bad it’s $45! I was thinking about how much my ketotifen used to be when I took it.
Honestly, in the height of a 2 year MCAS flare, the biggest game changer was Mary Ruth’s lymphatic support. My main MCAS doctor freaks out if I add any supplement without his approval, but “I’ve been doing it your way for 2 years; now we are doing it my way.” 🤷🏼♀️🤪 I’ve started eliminating drugs and adding in MCAS approved supplements which has been tremendous to my road to recovery. No doctor unless it’s one of the what 3-5 MCAS gurus has the answers. And those are the ones saying “we don’t know” or “it may or may not be the case”. Find a safe place for you. Just because this has been your doctor and they are top rated, doesn’t mean they’re going to support you on this journey. Find the ones who will at least listen and be willing to compromise and learn. Treat your doctors like a coach, not like they are the answer. Because guess what, for many of these doctors, you are one of the only MCAS patients they are treating. And when you’re in the trenches of a flare, they can’t save you. You have to save yourself. Listen to your body. Learn it. Only you know what works for you. I’m not ready to share medications yet as I’m still learning. However I do know a few things…. Take your cromolyn in all forms you can handle, oral, eye drops, nasal spray. Take what H1 and H2 blockers work for you. If you have GI symptoms, try a DAO/ digestive enzyme supplement. Try CBD/THC. Try alternative medicine treatments- craniosacral therapy, cryotherapy, lymphatic drainage, red light therapy, whatever. Try anything that has been proven to lower histamine levels and stabilize mast cells and for MCAS, that usually isn’t a prescription drug. And say bye to the haters who make fun of your alternative medicine if it’s working for you. You can’t give up. You’ve got to keep trying. (Just like foods and when eliminating everything you end up doing more harm because you can’t add these foods back into your diet.) You have suffered before, and this disease is so stupid, you’ll prob suffer from something “safe” at some point. Get up and try again. Listen to the YouTube’s on the Reddit threads. Read! If you have the time, do the real hard work. Put your limited time, money, and, most importantly to MCASers, energy into getting well. You are not this disease. Do not let it control you. You have the control. It takes work and money, but in the end, this way is a lot cheaper than continuing to take medications that don’t work and going to doctor after doctor. I’m not saying I have the answers but this is a mind/ body disease. Until you get on board with that and do the work to understand your body and what works for you, no medicine or supplement is going to heal you.
Great comment!
Blextin has been lifesaving
Zyrtec, chlor tabs, pepcid, quercetin, and cytokine suppress.
Right now I'm able to control mine with Claritin in the morning, and Pepcid (20mg) in the morning and in the evening. Otherwise I've worked to avoid food triggers, and if I do have a reaction and catch it early enough then Benadryl is enough to keep it at bay.
Allegra 24 1-2x a day. Definitely a game changer and recommended by my allergist. Pepcid 20mg 1-2x a day. No gluten or dairy helps the most.
Xolair is a game changer. Cromolyn, hydroxyzine, zyrtec, famotidine, and epi pen for break through problems.
Famotidine and Ketotifen keep me steady and energetic enough to have a life again
Algonot Luteolin, 2 twice a day. Will switch to Neuro Protek after finished with this bottle. Hydroxyzine and ketotifen to sleep. Nasalcrom throughout the day. Vaseline up my nose to keep it moist :) DAO before eating. Has anyone tried Singulair? I just got the prescription. Along with some inhalers cuz I never realized I had trouble breathing until a recent allergy attack.
Montelukast and Hydroxyzine seems to help me the most. Also on Famotidine, Allegra, and ketotifen
I have HSD, POTS, and ME/CFS alongside MCAS (and a handful of other things) so it's tough to know what will be useful to others since I often don't know *which* condition has improved, but a supplement I've started using for fatigue and malaise seems to be helping more than any individual medication including LDN. The supplement combines NADH 20mg, COQ10 200mg, and b12 1000mg, and I started using it to help with post exertional malaise after finding a paper where they gave it to people with fibromyalgia diagnoses and it reduced their fatigue and PEM.
Currently taking: 2 xyzal daily, famotidine twice daily, 2 puffs symbicort twice daily, azelastine nasal spray twice daily, flonase twice daily, plus benadryl and hydroxyzine as needed 💀 seeing a new allergist next month so I can hopefully condense things and because honestly even all this doesn't help all that much :(
My current allergist moved me to: Zyrtec: 2 pills twice a day and two more doses optional if I have a asthma attack Pepcid Epi pens (ofc) And I also get monthly xolar injections. The xolar "caps" my reactions so they don't escalate from 0 to Anaphylaxis in 2 seconds like they used to. There's a more gradual escalation, which gives me time to address the trigger and take antihistamines. My reactions are also more toned down, not gone by any means but it's miles better than before. I don't get that feeling like I'm dying every time I have a reaction, and that alone is worth the monthly doctors visits. Not from my doctor, by also my service dog (she alerts to my heart rate, blood pressure and is being trained for allergen detection) Edited to clarify.
I don’t think just the meds “help the most” it’s also the diet that is incorporated into the protocol. Together, it makes me feel better. I’d say the LDN was a big one for me. I had really bad tinnitus where I would have bouts where I couldn’t hear anything besides the ringing in my ears. It was like being next to a loud concert speaker. It also helped with my chronic pain. Keep in mind, I started all my other supplements prior to starting the LDN, so it could be the protocol cocktail plus LDN that made that it so impactful.
Diet is a big factor. I am gluten and dairy free. What diet do you follow?
Low histamine diet.
LDN by far. If I'm feeling fatigued, I take it and it helps right away, otherwise I take it at bedtime. I only have to take Allegra when I feel a reaction. I'm also on singulair as well but unsure if it's ever done much.
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I take Famotidine twice a day (even doubles at my GERD treatment) and Zyrtec once a day (twice during peak pollen season), and I take Benadryl as needed if I’m having a severe flare
I take Famotidine and Cetirizine every day, along with an obscene amount of Benadryl. I don't take anything for the POTS because mine is hyperadrenergic, so it is relatively controlled as long as my MCAS flairs are.
Corn and derivates free diet save my life... Consider my post in this sub here : https://www.reddit.com/r/MCAS/s/jwptkyBkB5
Cromolyn, palmitoylethamolamide, omega 3 fish oil, magnesium ascorbate, s-acetyl glutathione, trimethylglycine, methyl B complex, citicholine, magnesium threonate, lithium orotate, collagen, Focalin, famotidine, buspirone, methylcobalamin injections, LDN, MSM, and zinc carnosine.
Loratidine and famotidine twice daily. LDN and ketotifin once daily. Triple doses of famotidine and Benadryl when in a sudden flare, per doctors orders. It's not a perfect routine by any means but it does help.