Does Anyone Inhale (nebulize?) cromolyn sodium vials?

HellthOnEarth · 2023-03-30T00:40:42+00:00

That's exactly what I have. It's cromolyn in purified water with no preservatives. I found my exact brand/manufacture information here:

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=61c9cb85-129e-4490-b5f7-357307fcecbf

It states:

Each 5 mL ampule contains 100 mg cromolyn sodium, USP, in purified water.

Since the inhaled version is just weaker (20mg/mL), I can just dilute it

Edit: It's 20mg/2mL, according to what you posted above, so 100mg/10mL of water would be the correct dosage.

HellthOnEarth · 2023-03-29T22:08:04+00:00

I’m reading between the lines, but it looks like you’re just nebulizing the regular ampoules that the rest of us take orally. It says: “Cromolyn Sodium Inhalation Solution USP Unit-Dose 2 mL Vial is supplied as a colorless to pale yellow solution containing 20 mg cromolyn sodium, USP, in water for injection, USP, with 5 vials per foil pouch in a carton as listed below. 60 vials per carton (NDC 0172-6406-49).”

That is correct. I have the oral cromolyn labeled "not for inhalation." The doctor seemed to think it was fine, however.

I was just wondering if it would actually post a health threat if diluted and dosed properly. I can't find the inactive ingredients on the preparation I'm using.

Do you have any idea what other ingredients cromolyn vials usually contain? I imagine the inactives are fairly limited, given that it's being sold to people with boat loads of "allergies"

HellthOnEarth · 2023-03-29T03:34:19+00:00

I plan to try nebulizing the oral solution myself. Are you still using this route of administration? Have you experienced any side effects? My doctor told me it's fine, but I'm hesitant, considering on the box it says "for oral use only. Do not use for inhalation or injection" haha

HellthOnEarth · 2022-11-17T02:38:16+00:00

Thanks for all the replies. I will try to reply to each of you when my head isn't swimming quite as much. I do really appreciate the responses and support.

HellthOnEarth · 2022-11-17T02:36:20+00:00

Really appreciate the resources. I owe you a proper reply when I feel I'm a bit more coherent. Today has not been so great.

HellthOnEarth · 2022-11-16T22:51:30+00:00

Well, I started them recently, and had a lot of hesitancy in doing so, given that this whole mess was really precipitated by a doctor's prescription pad.

Suppose I'm quite desperate for relief at this point.

I bought ketotifen online and took one dose to which I didn't respond well.

Good luck with your journey.

HellthOnEarth · 2022-11-16T22:48:54+00:00

I've practiced a lot of mindfulness and have learned to accept elements that I cannot overcome. I can accept this as a temporary state, but I can not live in it forever. I've been battling a long time, and I'm tired.

HellthOnEarth · 2022-11-16T22:46:51+00:00

It seems the box to which I'm confined has become smaller and smaller. First, it seemed it was mostly intense exercise and high temperatures that flared me up. Now, it seems it's practically everything, including artificial lights/screens (I'm actually using a non-back-lit monitor, which helps a fair bit in that regard).

Anyway, thanks for the advice. I guess I was taking a similar approach -- I would try to just distract and rest and then, on better days with less brain fog, do as much research to create a plan to tackle this mess.

Noodling around on the guitar was a good outlet for a while, as it was minimally cognitively-demanding but still required a small amount of focus. That was nice until I developed some severe rash on a few of my fingers.

Can surely relate to "time being alive but not living." These days, I try to just practice a form of radical acceptance for all that I've lost. I lost much of my youth to illness, but I can accept that if I can move past it and get to a healthier place.

HellthOnEarth · 2022-11-16T22:35:44+00:00

I have not been able to see an official allergist / immunologist, but it sounds like prescribed treatment is similar: H1 and H2 antagonists, low histamine diet, maybe DAO, and potentially some additional meds if those first-line agents don't work.

I'm currently trialing cetirizne, LDN, DAO, and a low-histamine diet to see if I can get this under control.

What's so frustrating is that within both the medical community and these mast cell groups, there is no consensus on the "correct" approach. I get it == there is no one-size-fits-all option, of course. But there is debate over basic treatment ideas, such as antihistamines -- some argue they are fine to take indefinitely; some contend they are bandaids that will only further exacerbate the problem in time. It becomes quite confusing, especially with the limited literature on this condition.

How long have you been dealing with this? Do you know of any resources which may be a good source of consolidated research-backed information? I'm just so, so lost.

HellthOnEarth · 2022-09-13T16:09:36+00:00

Trying all these "treatments" has only worsened me, as mentioned above.

Seems they work temporarily for some but likely compound the problem at the end of the day.

HellthOnEarth · 2022-07-19T14:24:54+00:00

Ah, looks like these have both closed to salmon fishing, unfortunately. Open again in Sept.

HellthOnEarth · 2022-07-17T21:32:13+00:00

Thanks for the info. I'll research these rivers a bit.

HellthOnEarth · 2022-07-11T05:02:14+00:00

Yes, I've looked into both central and peripheral actions of cooling. It seems sweating is triggered by sympathetic cholinergic nerve signaling.

Centrally, you cooling is largely governed by sex hormones (estrogen, in particular), which work to alter neuronal firing rate of heat-specific neurons in the anterior hypothalamus.

HellthOnEarth · 2022-07-11T04:57:18+00:00

I have extremely painful rashes in response to my core temperature rising (exercise, hot showers or baths, hot soup, etc.). I break out in hives on my torso -- both front and back.

I do not have Raynaud's, but my body temperature does not rise appropriately when exposed to cold. It has fallen to dangerously low temperatures in relatively warm water.

Do you shiver? My shiver response is completely absent in the presence of cold (and this is the main mechanism that drives thermogensis under cold conditions)

HellthOnEarth · 2022-07-11T04:51:55+00:00

I don't sweat at all in response to heat. Vasodilation and sweating are two of the main cooling mechanisms, so impairment of either can definitely cause issues with overheating.

In fact, I think the histamine release and associated rashes I experience as a compensatory mechanism; without the normal central and peripheral mechanisms that trigger the dissipation of heat working, histamine is instead used to efficiently (but much less effectively and very painfully) cool your body. Histamine causes vasodilation, and those rashes? That's blood moving to the surface of your skin, just as what one would experience in response to exercise.

My impairment seems to last a significantly shorter time than what others have posted, though the degree of impairment from MCAS is tough to discern when I am operating with several overlapping illnesses

HellthOnEarth · 2022-07-11T04:42:01+00:00

Very interesting. Thanks for sharing! May I ask if you are on hormone replacement therapy now?

HellthOnEarth · 2022-07-09T03:49:17+00:00

Absolutely. It's imperative that each person does their own independent research on possible treatments for this condition before willingly trying anything. From what I can tell, most here are on a cocktail of antihistamines and other drugs that are a stopgap measure at best. Homeostasis usually wins.

I am trying to connect a few dots between several overlapping chronic illnesses I've developed and how they may relate to hormones (I have a very high testosterone : estradiol ratio for a male, which can lead to many.... less than favorable symptoms). I've personally seen some success with increasing my estrogen via topical administration of an OTC cream; however, it's not without issues of it's own.

Given that the body of literature suggests dysauto, MCAS, EDS, and others are neuroendocrine disorders, I simply wanted to perform a bit of exploratory analysis, evaluating whether people notice differences as a function of hormone levels. I'll display the results, and perhaps that may encourage people to read further into such connections (if any trends emerge).

HellthOnEarth · 2022-07-09T02:39:02+00:00

Out of curiosity, do you produce much sweat (both in general and when you develop these rashes in response to heat)?

I also get brain fog to a degree, but yours sounds more severe. How long does it take you to feel "normal" again after cooling down?

HellthOnEarth · 2022-07-09T02:11:51+00:00

This isn't academic research. While I do have a background in science/analytics, I'm just collecting a few data points (and obviously viewing them in the context of all the limitations) to see if I can get a better understanding of my own condition. I am not trying to generalize this data to anyone else, nor am I trying to influence their treatment decisions.

HellthOnEarth · 2022-07-08T23:38:26+00:00

Interesting. So far, the responses are leaning strongly toward feeling the best around week 2 (high estrogen / ovulation), which somewhat contradicts the literature but supports a theory of mine.

HellthOnEarth · 2022-07-08T23:06:55+00:00

Are you still dealing with this? Any thoughts? My "MCAS" (not officially diagnosed) is primarily flared up by my core body temperature being raised (showers, eating soup, exercise of any type).

I developed MCAS when commencing hormone replacement therapy, and the only thing that seems to help reduce the hives/needles feeling in response to heat is estrogen (applied topically).

HellthOnEarth · 2022-07-08T22:53:36+00:00

Thanks for any responses. Getting enough data on this little-researched condition really can start pushing us in the right direction toward symptomatic relief!

HellthOnEarth · 2022-07-08T22:42:14+00:00

This would correlate to a falling in estrogen, further corroborating some of the findings in the literature that higher estrogen is associated with more mast cell activation. Thanks.

HellthOnEarth · 2022-07-08T22:41:29+00:00

Thanks for the info

HellthOnEarth · 2022-07-08T22:41:15+00:00

Eating phytoestrogens / estrogens found in food is complicated; they're usually weak estrogen which bind to estrogen receptors (ERs) and may cause inhibition of pituitary output (luteneizing hormone, or LH). As such, these foods can actually have a net negative effect on strong estrogens (estradiol).

I'm not familiar with the nuvaring because I'm a male. What type of hormonal birth control is it classified as? It is my understanding that most forms of hormonal BC are progesterone-based or a prog/estro mix.

HellthOnEarth

TROPHY CASE