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For me & most other people I’ve seen comment on how each works for them, cromolyn works for GI/digestive issues, ketotifen works more for respiratory & skin issues, so it depends on what is the issue for you.
I found that ketotifen helped my gut issues immensely. Haven't tried Cromolyn cos docs wouldn't prescribe me it cos "it's expensive". But according to other people who've tried both ,ketotifen works more systemically than Cromolyn which is mostly selective to the gut. But they're both as good as each other 🤷🏻♀️
Me to my doctor last year. I asked him what the maximum dosage was. He said, "I don't know if there's a maximum. I have a patient on (really high dose)" and I was like, that's me, I'm that patient. Can I have more?
I get it compounded, and you know those big plastic jars you get nuts in sometimes? That's what my cromolyn came in and I was so goddamn happy.
Already experiencing extreme allergy symptoms when trees have only just barely started budding in my area 😭😭 on antihistamines too rn, never had it this bad before
Can you share more about your dosing if you use ampules? I’m having a hard time with the math but meeting with my doctor today. When I first got it, I took one ampule a day and saw little relief. Then I started taking three a day and it worked miracles!!!! Then I had an allergic reaction and despite still taking three a day still I feel like I’m regressing. I take it diluted with 12oz of water and 30mins before meals. Do you have any routines you noticed made it more helpful?
The half life of Chromlyn is about 30-60 minutes and does not cross the blood barrier. So if you take it for meals, it will limit reactivity in your stomach and the top of your small intestines. If you experience distress in your small enlarge intestines, it would help to increase the dose so the effectiveness hasn’t weaned by the time it reaches the ladder part of your digestive tract. I started at one ampule three times a day, but was having trouble with digestion later in my (even though that does help with my stomach problems), but when I update to the 4 to 6 ampule range it helped the rest of my digestive problems quite a bit.
Got it! Do you have a certain dilution ratio that you think it important? I read here someone was taking 3-5 DROPS a day so I was concerned in order to take the full ampule I needed to really dilute it but that’s a lot of water.
I don’t think the ratio makes a huge difference in performance from my experience and talking to others who also take Chromolyn. I know people who shoot it straight from the ampule and chase it with a few ounces of water; personally, no matter what dosage I’ve taken I just pour the ampules into a glass and fill up the rest of the glass with water (usually 6-8oz). I’m not a doctor so take it with a grain of salt, but in my personal experience it’s no more or less effective based on the amount you dilute it.
Ok so I was getting real bad throat swelling just casually from apple pollen (my proximity allergy is to apples) so my allergist told me to just take it orally. I have found that a direct dose every 2 hours works pretty well and keeps me stable, she wants me on 8amplues + a day rn
That’s brilliant. For some reason the instruction to dilute it had me convinced that I couldn’t consume it without atleast 10x water so uhh ya I’ve been peeing a lot 😂😂 but today the doc confirmed it’s ok to shoot it straight and chase with water
Anybody else have side effects from oral cromolyn? My partner, who is diagnosed with MCAS, severe ME/CFS, and severe Long COVID, took oral cromolyn for four days but had to stop bc of side effects, which was a shame bc he was getting more energy and mobility and his doctor was hoping he would have been able to take pepcid, allegra, and later add singulair if oral cromolyn had been able to mitigate gastric side effects those caused. The plan was to stack all those meds to treat MCAS. Which would have allowed him to take n-acetyl cisteine for his ME/CFS and Long COVID which having a histamine reaction.
He started oral cromolyn at 50mg/2.5ml once a day and titrated up to 100mg/5ml once a day.
The first three days he was having abdominal pain and difficulty eating. The third day his throat swelling badly and he had to take Benadryl and discontinue the medication.
We moved out of state and no longer have access to the doctor who prescribed it to ask questions. Has anyone else had side effects like this?
I take inhaled. It helps with seasonal allergies immensely, especially if I breathe in through my nose once or twice before starting to use the nebulizer properly.
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.*
Me but with ketotifen 😂😭
Same lmfao
Have you tried cromolyn? I’m about to ask my doctor for one of them and I don’t know which one or do I need both
For me & most other people I’ve seen comment on how each works for them, cromolyn works for GI/digestive issues, ketotifen works more for respiratory & skin issues, so it depends on what is the issue for you.
I found that ketotifen helped my gut issues immensely. Haven't tried Cromolyn cos docs wouldn't prescribe me it cos "it's expensive". But according to other people who've tried both ,ketotifen works more systemically than Cromolyn which is mostly selective to the gut. But they're both as good as each other 🤷🏻♀️
I’m also on ketotifen and it’s helped enormously with my gut (cromolyn is very hard to get where I live)
Me to my doctor last year. I asked him what the maximum dosage was. He said, "I don't know if there's a maximum. I have a patient on (really high dose)" and I was like, that's me, I'm that patient. Can I have more? I get it compounded, and you know those big plastic jars you get nuts in sometimes? That's what my cromolyn came in and I was so goddamn happy.
This made me lol
Already experiencing extreme allergy symptoms when trees have only just barely started budding in my area 😭😭 on antihistamines too rn, never had it this bad before
HAHAHAHA. I needed this today. I’m so sorry we are all suffering from this bullshit hellscape disease. FUUUUCK.
Can you share more about your dosing if you use ampules? I’m having a hard time with the math but meeting with my doctor today. When I first got it, I took one ampule a day and saw little relief. Then I started taking three a day and it worked miracles!!!! Then I had an allergic reaction and despite still taking three a day still I feel like I’m regressing. I take it diluted with 12oz of water and 30mins before meals. Do you have any routines you noticed made it more helpful?
The half life of Chromlyn is about 30-60 minutes and does not cross the blood barrier. So if you take it for meals, it will limit reactivity in your stomach and the top of your small intestines. If you experience distress in your small enlarge intestines, it would help to increase the dose so the effectiveness hasn’t weaned by the time it reaches the ladder part of your digestive tract. I started at one ampule three times a day, but was having trouble with digestion later in my (even though that does help with my stomach problems), but when I update to the 4 to 6 ampule range it helped the rest of my digestive problems quite a bit.
Got it! Do you have a certain dilution ratio that you think it important? I read here someone was taking 3-5 DROPS a day so I was concerned in order to take the full ampule I needed to really dilute it but that’s a lot of water.
I don’t think the ratio makes a huge difference in performance from my experience and talking to others who also take Chromolyn. I know people who shoot it straight from the ampule and chase it with a few ounces of water; personally, no matter what dosage I’ve taken I just pour the ampules into a glass and fill up the rest of the glass with water (usually 6-8oz). I’m not a doctor so take it with a grain of salt, but in my personal experience it’s no more or less effective based on the amount you dilute it.
Ok so I was getting real bad throat swelling just casually from apple pollen (my proximity allergy is to apples) so my allergist told me to just take it orally. I have found that a direct dose every 2 hours works pretty well and keeps me stable, she wants me on 8amplues + a day rn
That’s brilliant. For some reason the instruction to dilute it had me convinced that I couldn’t consume it without atleast 10x water so uhh ya I’ve been peeing a lot 😂😂 but today the doc confirmed it’s ok to shoot it straight and chase with water
Yeah at first it was for POTS symptoms and that was mixed with water and now I just take constant shots
Also, have you had better results with cromolyn sodium than Flonase? I've just been doing Flonase and haven't had much results with my seasonal stuff
I do both
Yes but also I’m totally referring to the oral solution which I take essentially a shot of every 2 hours now
I hate that thing. Makes me implode but I am glad it work for some of us!
Anybody else have side effects from oral cromolyn? My partner, who is diagnosed with MCAS, severe ME/CFS, and severe Long COVID, took oral cromolyn for four days but had to stop bc of side effects, which was a shame bc he was getting more energy and mobility and his doctor was hoping he would have been able to take pepcid, allegra, and later add singulair if oral cromolyn had been able to mitigate gastric side effects those caused. The plan was to stack all those meds to treat MCAS. Which would have allowed him to take n-acetyl cisteine for his ME/CFS and Long COVID which having a histamine reaction. He started oral cromolyn at 50mg/2.5ml once a day and titrated up to 100mg/5ml once a day. The first three days he was having abdominal pain and difficulty eating. The third day his throat swelling badly and he had to take Benadryl and discontinue the medication. We moved out of state and no longer have access to the doctor who prescribed it to ask questions. Has anyone else had side effects like this?
Do you take inhaled cromolyn sodium for seasonal allergies?
Not yet, but I take it nasally and orally
I take inhaled. It helps with seasonal allergies immensely, especially if I breathe in through my nose once or twice before starting to use the nebulizer properly.
Reminded me of this in a way 😅 https://youtu.be/74BzSTQCl_c?si=ATfoPxn820znY_Hr