All About Ketotifen for MCAS & My Experience! | Mast Cells | MCAD

All About Ketotifen for MCAS & My Experience! | Mast Cells | MCAD
This is all about ketotifen as a treatment for mast cell activation syndrome / disorder.
1:23: My main symptoms & why I was put on ketotifen
2:30: How ketotifen affected my main symptoms
5:58: How ketotifen affected all MCAS symptoms (for me)
9:50: Side effects & how they affected me
Thanks to @katie_andm.e (on Instagram) for the photo of hives used in the card I made!
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[@GeorginasJourney]

MCAS is not usually diagnosed on just a symptom basis alone as the symptoms are broad & can be explained by many other things (such as fibromyalgia, CFS, mold toxicity & multiple chemical sensitivity) so it’s really important to see a doctor if you have these symptoms so that they can look at your whole case & work on treating you most appropriately or referring you to the most appropriate place!

[@GeorginasJourney]

(update: the fatigue side effect is a bit worse than I realised & reported in this video. It was difficult for me to judge this initially as my fatigue from my other illnesses is so severe)

[@tills0172]

@@GeorginasJourneyThankyou for sharing ❤

[@GeorginasJourney]

1:23: My main symptoms & why I was given ketotifen 2:30: How it affected my main symptoms 5:58: How it affects all MCAS symptoms (for me) 9:50: Side effects & how they affected me (update: fatigue is a bit worse than I realised & reported in this video. It was difficult for me to judge this initially as my fatigue from my other illnesses is so severe)

[@stelasulzdorf]

I’m so glad you finally got diagnosed for MCAS and that you’ve now got some treatment! Thank you for sharing about your experience with the meds and how you’re getting on with it. I hope they will help you more and more over time Xxx 💕

[@GeorginasJourney]

Thank you so much! I’ve watched your video about what you eat with MCAS about 4 times now every time I need some ideas haha, thank you! Xx

[@gingerandcloves]

I'm glad the medication is helping with the nausea and vomiting and throat swelling. I've wondered if I have MCAS because I do have some weird symptoms that seem like they might be, but overall I don't think that's what it is.

[@GeorginasJourney]

Thank you! It can be so hard to tell what’s causing what! It could be worth trying an over the counter for a few days and seeing how you get on & if it does help, booking a doctors appointment to discuss if there’s a long term antihistamine your doctor could prescribe. They may not help & you can’t take otc ones for any longer than they state on the leaflet, but that could potentially be a starting point!

[@Dimich1993]

Congrats on finding both a new drug that works and a new understanding of what you have! I've tried quercetin for a few weeks and then gave up on MCAS hypothesis for that time. A lot of symptoms you spoke about reminded me of what I have, like a skin rash, throat closing, runny nose, some GI symptoms - those are symptoms of mold toxicity.

[@GeorginasJourney]

Thank you. That’s a good point, the symptoms I discussed are very broad & they are just symptoms, so they can also be symptoms of other things like mold toxicity, multiple chemical sensitivity, ME & fibro (to name a few).

[@portlandgeek]

I started a compound of Cromolyn Sodium and Ketotifen about a week ago. I started very slow, one pill with food if it caused nausea on an empty stomach (which it did). I am now able to take 1 pill 30 min before eating. Right off the bat I noticed that I was getting tired at night and able to go to sleep about an hour earlier (which is okay by me!). Plus, the quality of sleep is better! Thanks for sharing you journey! It's helpful to hear how others are doing with these treatments.

[@GeorginasJourney]

Thanks for sharing your experience too! How are you getting on with it now? Have you managed to stay on it & see improvements?

[@ElleInStitches]

I'm currently being evaluated for MCAS at the moment and my symptoms are pretty bad at the moment. I'm currently only taking fexofenadine twice a day and I'd absolutely love to have ketotifen for my symptoms. I've also had vomiting and diarrhea as one of my main symptoms which sucks pretty bad. Since I've lost loads of weight from being ill, the weight gain doesn't sound too bad actually 😂. Thank you for this video. Hope you're well ❤

[@GeorginasJourney]

Have a chat with your doctor, they may be able to prescribe it or refer you to someone who can, although I will say, I’m still vomiting most days & some nights, & it’s not a cure for most people, like fexofenadine. Another med that’s really good for both vomiting & diarrhea is ondansetron & most gastroenterologists can prescribe that :)

[@nikkimansell2760]

I will definitely be raising this with the GI team when I go for my post op follow up in a few weeks as I’m pretty sure that I have MCAS the more I read. I know that I needed the surgery due to adhesions and a section of bowel stuck to my abdominal muscle wall, but I hope to avoid any future surgery 🤞🏻. Thank you for sharing this video, it came at a perfect time for me with the point I am at in my journey with hEDS and other health issues

[@GeorginasJourney]

Hope it goes well, GI team themselves can actually prescribe ketotifen & similar antihistamines &/or mast cell stabilisers if they know about it, & given that you have hEDS, it’s very possible that you could have MCAS

[@nikkimansell2760]

Unfortunately my GI specialist has no knowledge of MCAS, did a quick search and found that it causes anaphylaxis and decided that it’s not possible I have it as I have never had an anaphylactic reaction 🤦🏼‍♀️. She even wrote in the letter to my GP that she has no intention of further investigating MCAS as a possible cause of the symptoms I have 😩😤. Not sure how much more medical gaslighting and unwillingness to investigate things I talk about I can take after almost 30 years of it 🤦🏼‍♀️😔😭. Not many options for 2nd opinions either as I live in Devon and we have a massive shortage of any medical professionals who know about EDS and it’s comorbidities after the only clinic at Derriford Hospital in Plymouth was closed due to Dr Fulton retiring… At least my next clinic appointment with GI will be in person as I won’t be really sick with Covid then (had to have the last one switched to phone call as I had a 2 week long dose of it and am still not back to my normal baseline for wellbeing 🤦🏼‍♀️). Ugh, the joys of being a zebra… 😔

[@GeorginasJourney]

@@nikkimansell2760 barely anyone has any knowledge of it as the nhs doenst even recognise it, but if you want to, you can get a GP at some point in the future and ask them about medications for long term allergy symptoms, particularly if you have photos of reactions and rashes they are usually on board with prescribing meds like fexofenadine that work for MCAS. Can’t recommend a consultant or clinic as the department I was under got closed :/

[@nikkimansell2760]

It’s crazy that the NHS doesn’t actually look after us properly, isn’t it 😔. I am on 180mg of fexofenadine twice a day year round due to being sent to the allergy team previously but, as I’m sure you’ve had happen, it doesn’t help with all of the issues and I still have horrible random reactions to things I used to be ok with 🤦🏼‍♀️. I’ll just carry on with my symptom trackers and hope that I’ll be taken seriously eventually. If I hear of any team that helps people with EDS, MCAS and POTS that opens up on the NHS, I’ll definitely share it. I know the consultant from Derriford still offers email consultations for GP’s needing advice but I’ve also heard that those GP’s don’t actually prescribe what he recommends a lot of the time so it’s a bit futile, really… Here’s hoping we get better care and support in the not too distant future 🤞🏻🤞🏻🤞🏻

[@LalaTheJellyCatxx]

Thanks a lot for sharing this info. Awesome video! I have a ten year old daughter with diagnosed mcas who is starting on this soon, and watching this was brilliant. I can see you are struggling with a few things and am sorry to see this. I wondered if you have tried supplementing with vitamin D and B12 for the fatigue at all? Sorry I can’t see how to send you a message directly so hope you see this! Thanks so much

[@BrainSqueezeYT]

It is great to hear you've got something that is helping you a bit with these symptoms! I also heard about really bad MCAS cases and figured I don't have it, but I really think I do. I'm on two medicines to try to help, the generic prescription versions of Pepcid and Zyrtec. Some of the symptoms I associate with MCAS are itching and burning eyes (from being around chemicals like fragrances), GI issues, chronic cough, headaches, skin reactions. I don't have the ability to see any MCAS doctors, so I'm just muddling along with my PCP trying to do the best I can. I wish I could figure out what foods are bothering my GI MCAS.

[@GeorginasJourney]

Thank you! Most people do end up being seen by other doctors for it, such as PCPs, gastros & immunologists, especially since the treatment for it is mostly and usually just antihistamines & mast cell stabilisers, a lot of doctors can prescribe them :) Have you tried the low histamine diet? Main triggers for MCAS are typically bananas, avocado, tomato, chocolate & spinach 🍃 & if you can’t cut them out, cutting down often helps :)

[@BrainSqueezeYT]

@@GeorginasJourney I've yet to have a doctor who knows much at all about MCAS. I tend to just get confused looks. I was wondering if maybe tomatoes were an issue for me, I eat them a lot in different ways. I don't know if I can handle cutting out chocolate, but spinach, bananas, and avocado should be easy and I will have to work to cut out tomatoes. It is worth a try!

[@GeorginasJourney]

Sorry, that’s what I meant, most people can’t see mcas specialists, but it doesn’t really matter since the main treatments are usually just antihistamines & mast cell stabilisers which any doctor can prescribe 😊 I know a lot of people who are on antihistamines that were prescribed by their PCPs & they’re doing well on that. & then I was just sharing the stuff about diet since I’ve researched it myself. I’m very similar, I cut out spinach, bananas (& barely ate avocado anyway), but tomato and chocolate are more tricky to cut out. There’s a mast cell related theory that states that you don’t need to cut histamine out completely to feel better though, it’s called the bucket theory or something like that. Hope you see some improvement soon ☺️

[@BrainSqueezeYT]

@@GeorginasJourney yeh I feel like my PCP doesn't know what else to try with me. I suggested something liquid I heard of, and she's supposed to be looking into it, but I can't remember the name. The one you are taking isn't approved in the US yet, so I can't ask about that one. I've just been overwhelmed fighting for other things with no ability to research more, so I appreciate your video and your replies, as always! The bucket theory makes so much sense from my experience so I hope that finding even a few things to cut out will help me. We eat pasta sauce, pizza, salsa, tomatoes in Indian food, chili, and so many things with tomatoes! But I think it could be something putting a heavy load on my histamine bucket.

[@Truerealism747]

Sounds like Candida not mcas

[@jerrelboyd2441]

If you are still having issues, look into CIRS, it has very similar symptoms. Good luck!

[@GeorginasJourney]

Thanks!

[@sophiehobley828]

Few comments - you can get sodium cromulate nasal sprays and ipatropium nasal sprays which I wonder if they'd help you.

[@GeorginasJourney]

Thank you! Are they prescription items?

[@sophiehobley828]

@Georgina's Journey yes they are - you can get a nasal spray which is a mixture of a steroid and an antihistamine (dymista) via a private prescription online if that's more accessible to you. But I do wonder if the ipatropoum especially would be good for you - it's meant to be good for sudden runny noses lol have a Google and see if what it's used for sounds like you x

[@GeorginasJourney]

Thanks so much, Sophie 🥰

[@kristinab6135]

Thanks for this I’m pretty certain I have MCAS too and have a lot of your symptoms but not sure if there are any specialists near me 🤔

[@GeorginasJourney]

You’re welcome, can you ask about being referred to one who’s not near you? I’m not that close to london, but I got referred there anyway!

[@GeorginasJourney]

Just thought, a gastroenterologist or immunologist would both be able to prescribe this if you can see either of them and they think it’s appropriate :)

[@kristinab6135]

@@GeorginasJourney that’s helpful Thankyou I will mention to my Dr next time I speak to them.

[@GeorginasJourney]

You’re welcome, hope it goes well!

[@losingmyfavoritegame8752]

Cozy? I happen to be a cozy person, lol! 😅

[@GeorginasJourney]

🤣

[@katerynaturchenko6937]

Hi. What’s your daily dosage of Ketotifen? Thanks!

[@GeorginasJourney]

1mg, but everyone takes a different dose for their own needs!

[@Hitherehealth]

Sir, i have hives and extreme itching on skin, eyes, inside mouth and ears and scalp or hives uracteria form mein hai, mujhay har 2 say 3 days baad anti-histamine leni parti hai? Kiya yeh tablets or syrup is condition ko khatam permanently kar sakta hai? Mujhay yeh condition 2 saal oehlay shuru hui and i still have hives with oral lichen planus? or hormonal fluctuation toh or hives ko increase kar deta hai. WHat should i do. And is this permanent treatment?

[@GeorginasJourney]

Hello! that is not written in English, but I’ll have a go at answering! Yes, this may help those problems! It comes in both a tablet or a liquid (syrup). It has to be taken daily, if you miss a dose, symptoms will return!

[@GeorginasJourney]

Regarding whether it is a cure- the video itself answers that, as it is not a simple question!

[@hillarylocklier5621]

How fast did it help?

[@GeorginasJourney]

Very hard to say

[@Truerealism747]

My mcas has changed over years for me it's fybromyalgia symptoms allergies are lot better sinus issues all to do with eds Asperger's am sure never seen a specialist yet for mcas Dr doesn't no where to refer have to find myself

[@GeorginasJourney]

A GP can prescribe fexofenadine for allergy symptoms, are you sure the fibromyalgia symptoms aren’t actually fibromyalgia? Or do you mean your fibromyalgia is now worse than the mcas?

[@Truerealism747]

@@GeorginasJourney yes ime told mcas can trigger fybromyalgia symptoms because I've had all other symptoms in years gone you see it's changed over the decades always one symptom constant.with others diffarant times upper body pain constant ones do you have much fybromyalgia pain

[@TruthSeeker410]

You Dysautonomia too? You need to see a functional medicine doc or natural path and get tested properly from mold & Lyme.

[@GeorginasJourney]

@@TruthSeeker410 yes, dysautonomia too. I inherited it all from a parent who is equally sick, spent months in hospital & was in a care facility by age 50, so it can’t all be put down to mold or Lyme for me. It is genetic.

[@JamieR]

Hi! 😊 Did you have mold toxicity?

[@GeorginasJourney]

Hi! Possibly, but most of my symptoms are caused by other things

[@JamieR]

@@GeorginasJourney Thanks for the reply. Did you ever try any binders? I see a lot of people and professionals talking about this. Dr. Paul Aronson has a series on MCAS on KZbin. Mold, metal toxicity, trauma etc are the main drivers. Sincerely, Jamie

[@GeorginasJourney]

No worries, but no, not that I’m aware of

[@JamieR]

@@GeorginasJourney Kk 😊 I hope you manage to figure out what your root cause is! Painful that so many struggle like this. Btw, If you want I can link to Dr. Paul Anderson's video / playlist. Pretty good stuff. Also, have you heard about the book 'Never Bet Against Occam'?

[@GeorginasJourney]

Thank you! & I actually know the root cause already for myself, but thanks anyway! 😊

[@losingmyfavoritegame8752]

Georgina, this is kind of crazy to admit, but I know about vomiting. As rare as it is in men, I was bulimic, purging. Because of my experience in the past, I, myself, want to help people keep being sick to a minimum. 😶 It is just because of my experience in the past.

[@GeorginasJourney]

Firstly, thanks so much for sharing that with me, it means a lot to me that you felt comfortable sharing it here. Vomiting from bulimia is very different to vomiting from MCAS, but I’m really sorry you went through that, I suffer from OCD myself & know the mental turmoil MH conditions can cause (as well as the physical toll in some cases). I’m so glad you’re doing better now, I hope things keep looking up for you, sounds like you’ve come a long way & you should be really proud of yourself!

[@losingmyfavoritegame8752]

❤ I am diagnosed with OCD. I think that kind of played into my issue. I do know we have different issues. I really wanted to just let you know I am not a stranger to it. No hard feelings or trying to be rude. 🙂

[@losingmyfavoritegame8752]

Im not necessarily proud of myself, however I have been more open minded and aware of the side effects of nausea. I always want people to be safe and be well! Yeah, it was rough for me in the past but because of that I want everyone around me to not have a hard time. 🙂

[@GeorginasJourney]

When you say you want to help others keep being sick to a minimum, what do you mean? Is there something you’re doing to help people? 😊 & I think regardless of our own experiences, not wanting others to be sick is a universal experience among (good) people 😊 (or at least, I would hope that it is)

[@kmacy90]

After years of …. Well, I’m sure you know the drill. Was scripted as MCAS by one of the very few who can (5 month wait to see him as “emergency”🙄). He put my on Ketotifen twice a day…in which I only took once a day at night. Mornings are my worst time of day with my stomach, almost feels like a sugar crash? Curious if your “GI issues” are like this any? Are your headaches migraine like… or more like the womp womp head rush feeling you would get from pots? I searched the web to a lot of reading… trying to scour KZbin now to see what I can find on this medicine as I’ve been on it a few years now…. Never did any homework on it. Like you, picked it up and a few days later was like “okay great, improvements”. I guess I am also one of the lucky 1000…. Gained weight as well almost immediately after started taking it. Not a lot, but a good 10-15 lbs for sure… then it stabled out. Appreciate you documenting your journey, as someone who understands well…you smiled and laughed some here, can appreciate that 😊

[@GeorginasJourney]

Hi! I’m very sick & nauseas all the time, but vomit worse overnight, doesn’t feel like low blood sugar I wouldn’t say, though. Overnight is actually the time my blood sugar feels slightly better! And my headaches are both, I get migraine like headaches from MCAS & also separate headaches from pots! It’s a lot for us both haha

[@kmacy90]

Checking back in on you and how you feel about this medicine? 8 months later and I’ve come across your video again. I’ve got an appointment next week with the allergist I have not seen in like 2 years… thinking about seeing if I can’t come off of this… see what happens and if it’s not a good idea, getting back on. If it’s safe. Curious after the 8 months, if it’s helping stable things out for you or how it’s going?

[@Joseph-w3z]

❤😂

[@GeorginasJourney]

?

[@Joseph-w3z]

@@GeorginasJourney !!

[@Joseph-w3z]

Mcas is a different term I thought 🤔💭

[@LalaTheJellyCatxx]

Thanks a lot for sharing this info. Awesome video! I have a ten year old daughter with diagnosed mcas who is starting on this soon, and watching this was brilliant. I can see you are struggling with a few things and am sorry to see this. I wondered if you have tried supplementing with vitamin D and B12 for the fatigue at all? Sorry I can’t see how to send you a message directly so hope you see this! Thanks so much

[@LalaTheJellyCatxx]

Thanks a lot for sharing this info. Awesome video! I have a ten year old daughter with diagnosed mcas who is starting on this soon, and watching this was brilliant. I can see you are struggling with a few things and am sorry to see this. I wondered if you have tried supplementing with vitamin D and B12 for the fatigue at all? Sorry I can’t see how to send you a message directly so hope you see this! Thanks so much

[@LalaTheJellyCatxx]

Thanks a lot for sharing this info. Awesome video! I have a ten year old daughter with diagnosed mcas who is starting on this soon, and watching this was brilliant. I can see you are struggling with a few things and am sorry to see this. I wondered if you have tried supplementing with vitamin D and B12 for the fatigue at all? Sorry I can’t see how to send you a message directly so hope you see this! Thanks so much

[@GeorginasJourney]

Best of luck to your daughter, I really hope this helps her 🤞🏽 You’re a great parent for looking into what she can/may expect from it 😊 I take low doses of Vit D & B12, but unsure if it’s enough. I do also have a severe folate deficiency which we can’t bring up as I can’t keep the folic acid tablets down 😅 Definitely a learning curve and balancing act finding things that help sometimes, but your daughter and I will get there 😊Thanks so much for your kind message & for doing all you can to be informed & prepared for your daughter 😊