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Ongoing shortness of breath, chest tightness and inflammatory chest
Hi all, I am reaching out to see if anybody has had a similar experience to my own and if anyone has found any resolution to my issue. I am a 25 year old male
I have suffered from shortness of breath, tightness in the chest and an inflammatory feeling in my chest that began in the beginning of 2022.
I am an ex smoker and vaper who did both for a period of 6 years full time at some points and on and off
One night after having some drinks and vaping, I was relaxing on the lounge when out of the blue I started to experience dyspnea. Panic set in immediately as this had never happened before and I ended up calling an ambulance. They did an ecg and measured 02 saturation and they came back normal.
From this point on I have had shortness of breath most of the time with minimal relief. Throughout the following years I have had 2 chest X-rays, multiple spirometries and pulmonary function tests, holter monitor, stress echo, ecg etc which have all come back perfect no COPD etc.
I have suffered a large hiatal hernia and reflux for 10 years which I had repaired 3 months ago with a hernia repair + partial fundoplication.
Oddly enough I have periods of time between 2-3 weeks where my symptoms improve greatly but this is short lived as they will return again every time. Quite obviously smoking and vaping seem to be a trigger of this shortness of breath which prompted me to give up cold turkey end of 2024.
Since my surgery my shortness of breath does appear to be a little more sporadic in nature. Certain seating positions appear to alleviate the symptoms slightly. Since this all began I have been able to take a satisfying breath roughly every 5-6 breaths. Some times I can get 2 or 3 good ones in a row.
It does not appear to get worse under physical exertion and I train in the gym light cardio and strength training on a regular basis.
Leading up to the period this began and also throughout the past few years I have suffered from sickness ie the flu, Covid, colds etc with some lengthened periods of time where I have had no sickness for months in between.
In 2018 I suffered pseudomonas which was a crippling superbug which cause me to lose a lot of weight and cough 24/7 until finally after getting repeatedly told it was asthma a really good doctor ordered a sputum test where I went on a harsh course of antibiotics to get rid of it. I have since been on antibiotics a lot of times for infections.
Going back to 2008 I was diagnosed with sport induced asthma which has been managed with ventolin although I’ve never really relied on it much. I also got pneumonia in 2012 but caught it early before it could develop into something serious.
I am now off PPI medication which I was on for 6+ years and my reflux has been relieved with only minor heartburn every now and again post surgery.
I have an appointment booked January next year with a pulmonologist so we will see how that goes.
At this point the only symptoms I have are dyspnea, tightness of the chest and an inflamed feeling of the chest which has been pretty consistent and not really gotten any worse or better in the last 3.5 years. I have suffered from a lot of anxiety and mental health problems over the years but given that I actually feel relaxed most of the time I don’t think this is the cause. I am starting to suspect chronic airway inflammation as I have rectified the hernia in my chest which I initially thought may have been the cause.
I am praying I have not done any irreparable damage but I understand due to vaping and smoking that this is a possibility. I am tempted to see if I can get a high resolution ct scan of the chest prior to my appointment but am not sure if this is the route I will take. I must say I am very nervous and afraid of the outcome.
I am wondering if due to my mum having auto immune issues my body could be signalling an immune system response which is causing the inflammation in my airways even in absense of triggers or infection. Left untreated I’m afraid of what would happen or what has already happened to my lungs. I have 2 young kids and I cant bear the thought of leaving them prematurely. I guess I should have taken better care of my health when I had the chance. I also can’t stand feeling this way 24/7 and I want my old life back.
Anyways thanks for listening, if anybody could help shed some light on my situation and what direction I should be heading with this that would be much appreciated. I am very much open to holistic/homeopathic methods also as I know with chronic lung conditions research and treatment options are very limited in western medicine. Thanks again.
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@ers12345 I was put on prednisone (30 mg qd) and about 6 weeks later was started on Cellcept (I took brand name....at the time I worked for the company that made it. If I was prescribed it now, since retirement, Medicare would approve mycophenolate motefil, the generic.) It takes weeks for Cellcept to start working, by the way, thus the need to keep the prednisone on board for a bit.
I was finally weaned off of prednisone about 18 months later.....getting off of it took quite a while, due to withdrawal side effects (horrific joint pain and fatigue). I stayed on Cellcept alone another 2 years and had no side effects. On prednisone I had gained 30# (just in time for my daughter's wedding!). I was taken off of Cellcept for short periods when I had vaccines or was taking Paxlovid for two bouts of Covid. About 2 years ago I started developing staph infections and then tested + for MRSA on my skin, so my pulmonologist decided to give me a break from it. Don't let the MRSA reference scare you. It was treated successfully and quickly went away...I had it only on my skin, and it could have been due to immunosuppression. My disease was stable, no worsening PFTs nor HRCTs, so he felt comfortable taking me off of Cellcept as a trial, knowing that if I developed inflammation due to the HP, he could restart me quickly on a significant dose of prednisone and add Cellcept all over again. I certainly prefer Cellcept to prednisone, but the latter is a necessary evil because of its amazing ability to kick inflammation's butt and prevent fibrosis from forming, if caught quickly. Has your pulmonologist considered HP as your diagnosis? Did he or she take a history for potential exposures?
@km6
I’m so sorry you're not feeling well, and I hope you find some answers soon.
I don't have any experience with a vaporizer, but I can completely understand wanting to try anything that might make breathing a little easier, especially when you're getting winded so easily.
It sounds like you're already doing so much between the Trelegy, nebulizers, rescue inhaler, and Tezspire. I really hope the Tezspire starts making a difference for you soon.
Just out of curiosity, do steroids help you at all when you're having a bad spell?
You actually sound a lot like me a few years ago. I went through a long cycle of not really knowing what was going on with my lungs with similar symptoms. One thing we did learn was that steroids helped me feel better, which pointed toward inflammation being a big part of the problem. And DLCO’s were in the low side. Because of that, my doctors are now starting me on CellCept to help get the inflammation under control and keep it stable long term. the shortness of breath will improve as well. Maybe ask your doctor about it ??
Wishing you the very best and hoping you get some relief and clearer answers soon. 💕
@handsdown
Congrats again on making it through to the other side!
Do you mind me asking how long you were on CellCept? Were you taking the brand name or the generic mycophenolate? And how long have you been off medication now?
When did your lung function tests and DLCO start to improve? Did you notice changes after a few months, or did it take closer to a year?
My doctor isn't 100% sure yet what is causing my lung inflammation. What she does know is that I respond well to steroids, but she wants me off them as soon as it's safe to do so. She's using CellCept as a steroid-sparing medication in the hope of getting the inflammation under control, stabilizing my lungs, and preventing future flare-ups.
She keeps saying we have to take this year by year, and I'm really hoping it works. Hearing stories like yours gives me hope that I can get stable, get off the medication one day, and move on with life too.
Thanks for sharing your experience, it really helps.
@sueinmn I have asthma, COPD and undiagnosed suspicious bronchiectasis. I am fairly well except for shortness of breath. I do not have wheezing asthma I have cough asthma. I'm on trelegy levabuterol mend saline nebs and a rescue inhaler. I am also on a monthly tezpire injection to see if that helps. I get winded very easily.
Wondering if vaporizer at night would be any help?
@ers12345 You sound lilke you could have Hypersensitivity Pneumonitis. High-resolution CT scan was done, correct? What did report say?
@ers12345 I was on Cellcept and steroids for several years upon my diagnosis with Hypersensitivity Pneumonitis, a restrictive interstitial lung disease, with decreased DLCO on PFT. Am now off both and stable. I found Cellcept to be easy to take and far less side effects than prednisone.
I am 85 and my results of faintness and dizziness seem counter-intuitive. I live in Sydney, Australia and came from the south coast of England, UK, 57 years ago.
I have lived in the same metropolitan area since March, 1969. Of course I have traveled: to Europe, the UK, India, and the USA.
In the USA where I was a legal immigrant (due to my eldest sister marrying a naval air pilot) I lived for 3¼ years mostly in LA. However I also lived near DC for 3 months, working as a car salesman for Sheehy Ford, South East DC; with the Beltway in plain sight. The South East was known to be the black area and the only quadrant that did not have the internal railway; for whatever reason.
I sold used Ford cars, which I thought was the most sensible reason for DC.
Currently, living in Sydney, I have found two somewhat counter-intuitive results of the faintness and dizziness mentioned above.
The first, about 3 years ago, seemed to be that IF I failed to eat lunch until late pm, I would feel the above-mentioned! Result? I avoided long periods of non-nourishment between meals.
The second, a bit more serious, is that recently, after a coffee in a cafe with my daughter, I might get up and walk outside, and, turning into the direction we intended to walk, I would suddenly need to stand very still holding onto something while I swayed with faintness. It passes fairly quickly but it really bothers me.
However, I have found that as soon as I start walking, quite briskly being fairly fit, the faintness disappeared!
It seems to me that, currently, activity causes my heart to revive quickly. My heart specialist has suggested recently that I might need a pacemaker, which I was somewhat startled to hear. But, now think it might be necessary.
Periods of relative inaction seem to allow the heart to relax a bit too much, as also occasionally happens in bed!
I would love to hear from anyone with similar issues to taking this medication. All insight is good insight 🙏
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1 Reaction@babesmom hello, and I’m so sorry you are dealing with this. I have had similar issues with my lungs. My symptoms go on and off but when they flare up x it’s bad. I can’t move with out gasping for air, I can’t walk for 5 feet without gasping for air, tight chest, shortness of breath-
My first Respiratory Doctor (I’m in Europe) said, I’m fine, gave me a load of inhalers and told me take a holiday to a warmer places. Omg !! I moved to a different specialist and found a great doctor that has been digging into my symptoms.
I would definitely recommend moving doctors until you find one that listens and cares not just tickets a box and takes your payment.
Anyone, - all my test have come back clear except for my LFT - my DLCO’s are lower then average and when I’m in a flare up, they go down significantly low. So permanent scaring which is what we want to avoid. My body responds to are steroids-
So far I have tested clear form Auto immune but regardless I’m being out on CellCept as a steroid sparing drug, and it should settle down the inflammation and clear it all up. It’s a slow moving medication . I will most likely be on this medication for 3-4 years, not ideal but im looking forward to having healthy lungs again.
We are not sure why I have this has happened or what caused it, but it did come on just after I had Covid.
Prior to that I had exercised induced asthma and seasonal asthma but Covid took my lungs into this direction.
Although I am stable now, I am on 7.5 mg of steroids I am starting this medication in a week to avoid further flare up and prevent what could be permanent lung damage if I get another flare up.
Maybe you can look into this medication as well. It will keep you here for your family and that’s most important.
Is anyone on this medication that can give me advice?
It’s CellCept and generic name Mycophenolate
Would love to hear from you.
I have Bronchiestases and mild COPD with some atelectasis (alveoli collapse), asthma (?).
Last year I had quite severe shortness of breath which continued. I discovered that an antihistamine relieves it and my immunologist is happy for me to continue taking it (the newer variety) daily. We don't know what is causing it although it appeared to start with sugarcane factory smoke exposure.
Perhaps you could try that?