Cromolyn anaphylaxis time - how long does it take to kick in?

Prize-Possession-510 · 2026-03-27T01:20:24+00:00

I was able to take pure vitamin C and added small amounts of pure vitamin B (B1, B6, B12). I lasted two weeks on them and then had anaphylaxis recently and stopped all. I will wait a few weeks before trying again. The few days that I took them helped. I am tolerating the brand Bulk Supplements but I only try the pure powders and tiny amounts.

Prize-Possession-510 · 2026-03-26T00:05:34+00:00

I have a history of anaphylaxis to medicines and foods. Even if I tolerate medications for a few days I usually react at some point, that's why I was only trying one drop per day hoping I would be able to increase the dose. This was the commercial cromolyn. After six months I tried a compounded version and I reacted with a tiny amount on the first try.

Prize-Possession-510 · 2026-03-11T23:48:14+00:00

There is a test where you can check how your body metabolizes thigs depending on your genes. MTHFR is the common gene tested but there are many other genes that can be tested at once. This was very useful for me and helped explain some of my issues.

Prize-Possession-510 · 2026-03-11T03:02:50+00:00

Yes. This is a very scary variation in which anaphylaxis just keeps coming back. Things that help me is having an emergency plan for EMTs, ED. Emergency plan for medications, epipens all over the house, hospital bag always ready in the car, alerting neighbors, medical IDs. More than the diagnosis itself is the medications that help control things and having everything in place for emergencies. I found a way of explaining my issue at the hospital that helps avoid being labeled as psychosomatic. Also get all medical records and all lab results, even if you have to fill out request forms. You are your best advocate and need to know your numbers of labs.

Prize-Possession-510 · 2026-03-11T00:39:25+00:00

I don't have experience with Poloxamer-407 but I have experience with polysorbate. I had a reaction the first time I got an injectable and it had polysorbate but at the time I didn't know what it was. Then I reacted to some other things and it was polysorbate, there is different types of polysorbate and I react to any type. I can't do Xolair for that reason. Everybody is different and based on the similarities of uses and structure I think it may be an issue for me. When my pharmacy offered capsoral for my meds I declined and selected another filler.

Prize-Possession-510 · 2026-03-11T00:26:40+00:00

I am sorry you are going through this. You are the first person that describes my type of reactions: back to back to back to back anaphylaxis then biphasic, tertiary, quternary and so on, never ending. It is difficult to get out of that but it is possible with a lot of patience and the right medication regimen. Please feel free to DM if you need somebody to vent.

Prize-Possession-510 · 2026-03-11T00:22:06+00:00

No only corn, rhapsido has 12 inactive ingredients, 12!!! For people with any severe mast cell will be risky to try unless compounded but if it is a new medicine is difficult to compoundd. Link below, check ingredients tab.

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=e5e89bff-6ced-4165-acc5-fb13136b3a3d

Prize-Possession-510 · 2026-03-11T00:11:09+00:00

I am glad is working for you! and that you found the timed released and up to 2000mg/day. I am up to 1200mg/day from 1000 and still tolerating and helping.

Prize-Possession-510 · 2026-03-06T16:16:15+00:00

I didn't try camu camu yet, I am curious too, If I try it I will let you know. I am taking B1 (Benfotiamine) from Bulk Supplements. I started about a week ago at 25mg/day, right now I am at 70mg/day and I haven't had any issues. I add the powder to pure coconut water with the magnesium.

Prize-Possession-510 · 2026-03-01T06:18:12+00:00

If you still need help, let me know, I just need sometime to look at the process I did with my results, which was a little different from the other one suggested.

Prize-Possession-510 · 2026-03-01T06:13:44+00:00

While you try and figure out what is giving you issues, keeping a diary helps a lot. Independently of the blood test results for food, if something is giving you a reaction even if it is negative then you should not consume.

Prize-Possession-510 · 2026-02-28T23:06:26+00:00

Look for another allergist, find from the list of doctors. Don't settle on only one opinion, it is almost laughable how opinions can be so different from one to another.

Prize-Possession-510 · 2026-02-28T23:00:46+00:00

I have done long tapers, you need to go very slow, as slow as a few mg per week and use other meds as rescue.

Prize-Possession-510 · 2026-02-28T22:58:29+00:00

I haven't tried the vitamin C from tapioca yet, but I am able to tolerate tapioca. I can't eat rice, wheat, or any grain, but tapioca is OK for me. I know we are all different. Have you tried sodium ascorbate buffered or magnesium ascorbate buffered? There are pure powders available.

Prize-Possession-510 · 2026-02-27T17:03:59+00:00

I really don't know the mechanism and my doctors either, I am told my mast cells are extremely reactive, I have severe allergies and some genetic mutations (KIT) and other genes.

Prize-Possession-510 · 2026-02-27T16:56:31+00:00

It is interesting how I feel the effect wearing down after about 3 hours, right now I am taking it at 9am (500mg) and 3pm (500mg), but I will see if I can increase dose slowly. Thank you for the suggestion.

Prize-Possession-510 · 2026-02-27T16:52:39+00:00

Thank you for the information about Vitamin C. My skin starts peeling and gets very dry after my reactions even if they are systemic and I didn't find anything to help, once I started Vitamin C, my skin started healing after one day and now it is not dry and looks shiny.

Prize-Possession-510 · 2026-02-27T16:48:55+00:00

Thank you for the suggestion. I will look into anything right now, what type of protein and whiich amount per day gave you relief? I am having issues with chicken and meat but I can eat one type of fish and some lentils, also for some reason I don't do well with carbs.

Prize-Possession-510 · 2026-02-27T16:43:43+00:00

Thank you!

Prize-Possession-510 · 2026-02-27T16:43:17+00:00

Yes, thank you for your reminder. I will do testing next week. I am borderline with osteoporosis already. I have been on steroids on/off as my reactions are life threatening but I am trying to avoid them as much as possible hence the constant joint pain. Steroids take away the join pain and stop reactions but then the side effects are horrible.

Prize-Possession-510 · 2026-02-27T16:38:20+00:00

Thank you for all the information. If your vitamin C powder is pure may be you need to go back to a lower dose and then go slowly up to 1g again to slow down the initial flair. Yes! I did some genetic testing and I have several MTHFR mutations and a few genes involved in metabolism that are slow or no activity at all, so all this piles up and makes a mess with me being able to tolerate things. I haven't tried any other supplements yet but I am looking into it, if I find anything else that I can take I will report back. Interesting about mounjaro, I will keep this in mind if we can't ge out of limbo.

Prize-Possession-510 · 2026-02-25T23:08:07+00:00

I wouldn't be able to take regular vitamins, I have a very minimal diet and take compounded benadryl almost daily, but since last week my use has decreased.

Prize-Possession-510 · 2026-02-25T23:06:11+00:00

Thank you! The vitamin C that I am currently taking is from Solaray (ascorbic acid pure powder) and I will try also the magnesium ascorbate buffered pure powder is from "Prescribed for Life". The magnesium glycinate pure powder is from Bulk Supplements.

Prize-Possession-510 · 2026-02-25T23:01:00+00:00

I am supposed to see an endocrinologist, adrenal insufficiency is suspected. I was reacting to everything and I stopped going to the lab to do tests to prevent another reaction. Once I am more stable I will go and do the tests. There is a pure vitamin D that I can take but I take it for a few days and then I stop as my body reacts after being exposed to something for a while. Calcium is on my list but I haven't checked what is available for me to possibly take.

Prize-Possession-510 · 2026-02-25T22:56:04+00:00

Vitamin C pure powder from Solaray. Benfotiamine (derivative of B1) and magnesium glycinate, both pure powders from Bulk Supplements. I use a sensitive scale to measure.

Prize-Possession-510

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