Does anyone have Reactive Airways Dysfunction Syndrome (RADS)
I have recently started tests to determine if I have Reactive Airways Dysfunction Syndrome (RADS). I have googled with limited success as this is described as somewhat dubious. I was in the past diagnosed with severe COPD but my lung functions improved, I am now in the process where PFT test came back Sept 2024 improved from 2021. My DLCO improved from 52% to 80%,DLCO/VA 52% to 91% and VA from 66% to 88%. I am happy but not sure what is going on.
In 2021, I stop taking Ventolin as it was only a limited relief(10 minutes). I was on Symbicort but it did nothing for my shortness of breath or severe migraines. I stop taking Sept 2021. I was diagnosed in spring Mar 2021 with Nocturnal Hypoxemia and was put on oxygen at night. This is when my lungs seem to get better.
In Sept 2018 was exposed to Anhydrous Hydrogen Chloride Gas, I believe this is what caused my health situation but Pulmonologist's did not think so and were putting all their testing to my asbestos exposures/limited smoking. Occupational health Doctor believes it was from the chemical exposure. He compare this to what happened to the responders of 911 twin towers and their health concerns that followed their exposure's. Seemed plausible to me.
If someone has any experience with RADS, I would love to know what to expect and tests that were performed to determine this condition,
Thank you for your time.
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@anhydrous chloride Hello and welcome back to Mayo Connect. It sounds like you are finally on your way to a correct diagnosis, and surely Occupational Health is the place to be.
I was drawn to answer your post because at first I thought RADS might b another term for RAD ((Reactive Airway Disorder) which is what I have, but I learned it is a subset based on exposure to toxic fumes. Unfortunately, it does not seem to be well-recognized or studied, and most people get diagnosed with COPD, like you did.
There is little literature, but here is what I found:
https://pmc.ncbi.nlm.nih.gov/articles/PMC8087388/
As for diagnosis andd treatment, here is what I found:
https://myhealth.ucsd.edu/RelatedItems/3,60072
Maybe someone will see your post who has experienced this first-hand, but it seems like it is usually teated just as you have been. If your new doc suggests different inhalers (or nebulizers) to try, you might want to give them a shot - it took several tries to find the one that helps my reactive airways.
I see that your lung stats have improved over time, have your symptoms gotten better or less frequent?
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1 ReactionHi Sue,
My symptoms have got better but have changed. I at first had severe SOB doing anything. That has changed to only if I lift something heavy or a chemical smell is a trigger. When I get a severe trigger, it only happen two times in the last 2 years. The only thing that helps and thank god I still have is oxygen, I rest with that and in six or seven hours my normal breathing pattern returns. I have had severe migraines for the last 6 and half years that hasn't change. The problem in Regina, Saskatchewan, Canada we are loosing health care professionals and it is difficult with all the new people coming to our city to get a experience health care provider. As this is a unique injury it has taken Dr. Niels Koehncke over 6 years to come up with this and he is still in the testing phase. I try to stay positive. If they offer a inhaler that works, I am all in. I can see his problem with having multiple exposures over my career ,you would need someone that has had long term asbestos exposure and multiple chemical exposures and what worked for them. Then again I maybe the only Canary that lived, LOL.
Thank you for the above links, I will read and add them to my collection.
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1 ReactionI was just diagnosed with RADS in November of 2023 and have just been told I have met MMI. I was a laboratory manager but was exposed to many chemicals at once in another lab. Myself and others were affected. I now have to accept that I have a chronic condition. I am 46 and had no previous lung issues. It’s very scary and I’m still trying to figure out all my triggers and know a few. I carry my rescue inhaler everywhere and also take inhaled corticosteroids and Singular plus a few others for GERD, I also have VCD from the exposure.
Hi @radsisnotrad
I was recently exposed to chlorine bleach at a high concentration and believe I also have RADS now. Curious how you’re doing now, and what you’ve tried that works? My symptoms are all over the place but soon similar to what you described.
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1 ReactionWith mine I had to do a lot of research to find out what I was up against. I was told when the pipe release in my face it was butane. I only found out it was anhydrous hydrogen chloride after some research a few months later. This was when I started to find out how to get the acid out of the base of my lungs (The relative vapor density of HCl is approximately 1.27 relative to air) I could tell I was for lack of a better description it was like I was drowning.
As luck would have it, I was diagnosed at the same time with sleep apnea and prescribed with oxygen at 2L
I was mentioning this at the time with a RN from Florida,she mentioned this to a specialist in their Covid unit.
He suggested that the acid could be the cause of not only my sleep apnea but also for my Fev1 decline. He said
I should talk to my pulmonologist (Dr.Tallon) but she insisted it was COPD caused from smoking when I was younger and it would only get worse. The RN asked what I could do and he suggested I sleep on my stomach.
Fast forward 3-4 weeks I stopped producing phlegm and the fact I was on 2L of oxygen my breathing started to
improve. It improved so much a occupational health doctor I had been referred to at the start(2019) Dr.Neils Koehncke took notice of my 2024 PFT tests and with the help of Dr.James Dosman. I am now trying to figure out my medication for work related asthma or RADS. When your are injured at the Co-op refinery in Regina
you don't get the medical help you need. They will try to silence you.
I would have not had to go through half of this if my injury would have been self induced. I have had to figure this all out on my own. I am no health professional so this is my situation only. So my situation my not help many as
along with being exposed to anhydrous hydrogen chlorine I was exposed for over 13 years of asbestos in confined spaces. So as I may have got my lungs in a better state now, but they may change for the opposite it the future.
So in saying what helps me,I do not want anyone to get a sense of false hope. I do hope some of my experiences can help someone. Its been over 7 years now and my symptoms have been all over the place too. My next step is to get a CT scan to see if my calcified granuloma has increased. This is likely caused by the asbestos but only a biopsy would prove this. I am on the up hill with my test results, so not willing to risk a biopsy yet.
I would try and make sure the chlorine is out of your lungs and since it is a chemical type injury it may in some cases be reversible to some degree. I can share some of my PFT test results so you may compare. I would get a
xray to see if they can see lung damage. The first of my two Xrays showed a partial collapse and PFT test showed reduced volume, now 7 years later my Xrays show normal lung Xray and full volume on PFT test and FEV1 at 52pre 63post. This is up from 41% in 2021. The reason I am telling you this is a few months after my injury my first PFT test showed FEV1 at 50% but volume down TLC 4.41 the acid kept attacking until in 2022 i started the other way after I got rid of it.
I still have SOB on stairs while carrying items but no need for rescue inhaler to continue my day unlike before.
After my injury I could not climb 5 stairs without a rescue inhaler or do any house hold chores. I hope you are not experiencing migraines,my rads does produce major head aches but with Pulmicort inhaler no migraines yet.
Its only been just over a week so test results not in yet.
I hope you all the best with your exposure and let me know if you find out any results that help you!