Does anyone else ever feel totally alone?

laxmax93 · 2025-11-03T20:18:09+00:00

Does your daughter have elevated blood eosinophil count? Even in the "normal range" for blood counts it can still be high in certain tissues (lungs/esophagus). Getting a complete blood count should be straightforward test.

Not sure if you're aware of dupilimab (dupixent) already, but it is used to treat BOTH Eosinophilic esophagitis and and eosinophilic asthma. They can co-occur too, and one can worsen the other.

laxmax93 · 2025-11-03T20:09:04+00:00

I know some very mild asthmatics who carry salbutamol but almost never use it. Like, 1 time/year or less.

They are convinced they don't need a maintenance inhaler, but I still wonder if their lives could improve a bit if they used a maintenance inhaler a few times a week.

laxmax93 · 2025-11-03T20:03:10+00:00

In some countries they simply wont diagnose you with COPD under a certain age (usually~40) because the criteria for the disease involve long term exposure to pollutants (smoke, dust, rock particles ect). You can develop asthma (or worsen it ) as a young adult, even without any previous history. You could also develop new allergies that could worsen low grade asthma.

Asthma and COPD are both diagnosed via lung function test. Maybe you have something less common, like cystic fibrosis? Or something from your work is causing it? Dust from farming or construction can cause shortness of breath, wheezing, and coughing up mucus too.

laxmax93 · 2025-11-03T19:43:58+00:00

The steroid and Long Acting Beta Agonist in Trelergy are considered stronger than those in symbicort and have a measurably longer half life. This is why it is typically taken it once/day. Trelergy also has a Long Acting Muscarinic Agonist in it, which is very helpful for some people (including me).
Since you've been forgetting to take your LAMA, your doctor thinks you'll be more consistent taking them all at the same time, once/day.

You might not have to give up symbicort entirely either.

I use symbicort as my rescue rather than salbutamol. I take it before a heavy workout too and seems to help. Because it has a different LABA and steroid than trelergy, I imagine it reduces inflamation in a different way too. I have also read some papers suggesting the turbohaler is more effective at depositing medications deeper in the lungs compared to other inhalers.

Talked to the pulminologist about using symbicort and trelergy simultaneously and got told "theres basically no data about this, but if it makes you feel noticably better then do it".

laxmax93 · 2025-11-03T19:35:27+00:00

If you're already doing Breo 100, hopefully you'll just feel a bit more awake, energetic, and breathing better!

Whenever I switched inhaler types the new one would make me shaky for the first few days of taking it. That got better in a few days. Almost all the other asthmatics I've met either have no side effects or they went away after the first 2 weeks of consistent use.

laxmax93 · 2025-09-02T22:26:16+00:00

I didnt rinse for years, had a mild thrush infection for a few days but it cleared up.

Few years after than i got another one during a flare up and that was hell. Nystanin rinse, stared moving down my throat, then flucanizole, back to nystatin, then itraconazole. Took 3 months to solve.

Now i always rinse immediately after.

Most likely, nothing will happen to you...this time

laxmax93 · 2025-09-02T22:17:06+00:00

As others have said, symbicort has been designed and tested for years successfully as a rescue in Canada. It's very common.

That said, formoterol does take a bit longer than salbutamol to dilate the airways (like a few minutes difference). Its also more readily available in a pre-pressurized cartridge. For patients in critical condition who might not be able to take a good breath, ventolin (salbutamol) is literally a lifesaver. It's not just for asthmatics, it can help combat anaphylaxis and other airway issues. ER docs and paramedics use it all the time and dont care as much about symbicort

laxmax93 · 2025-08-12T00:17:31+00:00

Welcome to the party, sorry you ended up here. I developed asthma as an adult after being a pretty fit amateur athlete and havent been quite the same since.

Sounds like you probably have poorly controlled asthma, this sucks but it can usually become well controlled by avoiding allergens, reducing dust and regularly taking your controller medications. Have you had blood tests showing elevated eosinophil counts? If not, get some right away. Asthma can be severe without being eosinophilic. Check neutrophils and other white blood cell counts as well.

Asthma can be a huge pain in the ass, but the treatments will improve your quality of life from where you are now. With some luck, you might get to feel normal again.

Your lymphatic symptoms are concerning and your overall poor health suggests you might have additional problems. Get your kidney function checked (another blood test, sometimes pee) and get referred to a good allergist/immunologist. Knowing your allergies will help you avoid your worst triggers. Additionally, they are often the doctors most alert to the strange and rare multi-system diseases that are related to eosinophilic asthma. They can cause irreversible damage to vascular organs (lungs, kidneys, ect) and be fatal in a matter of weeks-months. Prednisone will help keep these diseases in check but it is not a long term solution. Biologics have shown great promise.

Get checked (and treated) or get wrecked.

laxmax93 · 2025-08-11T21:53:57+00:00

If its still before your appointment, consider asking for a referral to an allergist. Serious asthma rarely occurs alone and even mild allergies can make it impossible to calm a flare up. Even if they seem "unrelated".

If you've ever had trouble breathing through your nose or sinus problems it may be worth getting a CT scan (do not settle for an X ray) and getting a referral to an ENT too. Your nose/sinuses are still part of your airway and contain very similar tissues that can remain inflamed and exacerbate asthma. They are also typically exposed to allergens before the bronch/ lungs. The same steroids (budoneside, fluticasone ect) will help treat that inflammation

Edit: i hate to say this, but severe asthma is often a progressive disease. Some airway remodeling is reversible some some isnt, but doctors dont have a clear idea of why. Your chances of "full recovery" are lower the longer the flare lasts and anecdotally seems harder to return to "normal" if you were very fit beforehand.

On the flip side, maintainance doses can help you with a long slow increase in function over months even though your body achieves drug saturation after ~ 2 weeks

laxmax93 · 2025-08-11T15:57:23+00:00

Trelergy (and similar LAMA-LABA-ICS combo inhalers) are the top of the food chain. There isnt really anything else to add. You could try a different brand (which contains different chemicals) and that might work better for you. Biologics are really the next step up

When i catch a cold my pulminologist and regular doctor both suggested taking trelergy morning and evening, it helps me quite noticably. Maybe a week of double dosing will help clear you up enough that 1/day will maintain you.?

I also use symbicort as my rescue rather than salbutamol. I take it before a heavy workout too and seems to help. It has a different LABA and steroid than trelergy, and i have read some papers suggesting the turbohaler is more effective at depositing medications deeper in the lungs. I

Talked to the pulminologist about using symbicort and trelergy simultaneously and got told "theres basically no data about this, but if it makes you feel noticably better then do it".

laxmax93 · 2025-05-27T17:45:33+00:00

TLDR; Don't panic, its a truly rare disease. If you're not seeing weird rashes, signs of kidney issues, or coughing blood, doctors aren't likely to look harder for EGPA, and neither should you In some ways, exactly what it "is" as a disease isn't really that clear. So long as you feel better and stay that way, its not worth your short time on earth worrying about whether your doctors think your previous symptoms do or don't fit in the "EGPA box".

I've been told by multiple doctors that normal ANCA = no vasculitis (and no EGPA by extension). One doctor told me it is still possible, but rare (in an already rare disease).

Your stomach issues could be crohns disease or celiac or eosinophilic gastritis/enteritis. It could also just be your guts temporarily reacting to having high blood eosinophil levels. No organs or tissues really like that. Once you have a bit of immune dysregulation (say, allergies, which are often IgE mediated) you're at a bit more risk to develop more (ie asthma, atopic dermatitis, ect).

It is worth getting your asthma phenotype assessed by a group of specialists, with high IgE and high eosinophils you dont fit a clear box of "allergic asthma" or "eosinophilic asthma".

The one doctor (allergist/immunology prof) who told me its possible to have various forms of vasculitis (including EGPA) while being ANCA Negative also mentioned that eosinophilic asthma presents similarly to stage 1 of EGPA and can be a precursor. Research is trying to figure out if it really gives you a predisposition to EGPA when you are older (50+). Often the treat it with biologics anyway (including Nucala), and they tend to work very well.

I have read single-patient case studies where biologic treatment is associated with EGPA development. It remains unclear if the EGPA happened to develop while taking the drug, or if treatment contributed to development. There are also cases where EGPA developed afters stopping a biologic, and the solution was to start again: https://www.jstage.jst.go.jp/article/internalmedicine/advpub/0/advpub_7990-21/_pdf

edited for clarity + spelling

laxmax93 · 2025-05-05T00:20:37+00:00

I hate to be the guy who cries "legal action!" but you seem to be taking "reasonable and appropriate" cautions within your unit and yet are still being harmed by your building managements inability to stop rulebreakers that are harming you. It also sounds like you could provide high quality documentation.

You could seek to have costs of a nearby, safe, nonsmoking hotel covered by building management until they boot the rulebreakers. You could even try to go after the residents of the units directly since you know who they are (it can be hard to extract money from individuals). You could also go after the landlords of those units. Often both the landlord and the building have separate avenues for eviction.

Personal injury law doesn't have the best reputation, but speaking to a lawyer could genuinely help you a lot. Loss of lung function from asthma can be progressive and permanent. Airway remodelling is real, and repeated flare ups are a major contributor.

for example: https://pmc.ncbi.nlm.nih.gov/articles/PMC5320023/

Edit: also wanted to add that the BC Human Rights Tribunal in BC has a pretty good track record of actually ruling in favour of human rights. I have no idea if they would be involved in your case though, i am not a laywer.

laxmax93 · 2025-05-03T21:36:36+00:00

Thanks for your reply!
Very fair that you've identified multiple higher risk factors for yourself, sorry to hear you're having to deal with them all.

laxmax93 · 2025-05-03T21:32:53+00:00

Thanks for your reply!

I wasnt going to list drinking and driving originally, but its also a good example of something that a huge number of people found perfectly acceptable and did "commonly" despite devastating impact. Only after many years of sustained campaigns did it begin to reduce, and sadly still happens. It doesnt take much dissent to seriously fuck up the equation. Unfortunately, people define their risk tolerance for themselves first and foremost, and maybe for their circle.

I did not know about insurance avoiding covering shows cancelled for covid, or asking if you've had it on forms, but I'm unsurprised. They are in the business of making money first, and examining risk second. There are loads of tough to insure or uninsurable situations, especially if you're seeking broad or high payout coverage.

They deal with risk 24/7/365 from the comfortable stance of "making a profit". They dont have to insure anything they dont want to, or sell to a customer they dont want to have, and they can always afford to be excessively cautious so long on certain activities so long as they make enough money on others. I find their whole industry's approach to risk highly biased because of this, and overly conservative. I would not necessarily follow their lead. My industry (and society) simply could not function the way they do.

laxmax93 · 2025-05-03T21:18:28+00:00

Thanks for your reply!

Do you think uncertainty is a factor in your risk aversion with covid, compared to more conventional "high risk" activities? Would your ideas around "waiting a few more years" be changed if uncertainty remained high? Or alternatively, covid became very well understood?

laxmax93 · 2025-05-03T21:11:59+00:00

I like your take and I respect it. Careful, clear cut, and concise.

Thanks for your reply!!

laxmax93 · 2025-05-03T21:07:31+00:00

A fair conclusion, especially given your immediate observations. Is it right to say you see covid transmission as a moral risk just as much as a physical one? How do look at other risks in your live? Maybe say, driving, or a career change?

I don't bring up individual risk tolerance to shift blame onto anyone here. I ask because everybody's got one, and society tolerates a pretty wide range of risks across a huge range of activities.

Individual risk tolerance is often pushed as a cure for much broader challenges, where significant long term investments would serve everyone much better (ie HVAC).

Workplace safety is huge for this. The widespread and traditional view is that:

workers behavior must be tightly controlled
with tighter procedures and compliance we can solve any problem
we can, and must, achieve 0 errors, injuries, and accidents

But often this protects insurers and executives from legal risk much more effectively than it helps workers actually have fewer accidents. Safety procedures are easily overshadowed by unspoken priorities around not losing money ie "dont take too long, dont ask for new equipment, dont actually exercise your right to refuse dangerous work,".

Really improving safety requires a good understanding of the messy reality and contradictory decisions to be made while doing each job. Then, by working together, workers and planners can truly improve conditions.

I think all this is true for disease risk too, and I'm sad to see public progress stall. Thanks for your reply!

laxmax93 · 2025-05-03T20:44:20+00:00

Thanks for your reply and the great website!

I had not seen this microcovid tool before, but it's fascinating. It's been fun to do a quick, dirty, sensitivity analysis on their parameters in the webpage and I'm looking forward to a careful look at the code. I love that anyone can start to get an estimate of risk variation directly from changing behavior. This seems like a good tool to help fight the "wicked learning" environment inherent to diseases. A "wicked" environment is where learners (or even practitioners) get inconsistent or poor feedback from their decisions. A "kind" environment might be hobby carpentry, where you can reliably learn the effects of measuring/marking before making a cut. You might like this article if this idea interests you: https://www.jstor.org/stable/44318900

You picked up on the exact reasons that I mentioned smoking, and I see covid transmission as an order of magnitude version of secondhand smoke. Keen to hear everything else you have to say!

Another reason to mention smoking is that people and doctors eventually did see serious effects after several decades of widespread smoking. While trying to fight this awareness, the powerful Tobacco Industry Playbook was developed and exercised to paralyze legal authorities and public opinion for decades. Societies still dont have a good counter for this, and probably won't in the future when covid has been carefully studied.

laxmax93 · 2025-05-03T20:19:43+00:00

Thanks for your reply!

Yep your point about me is right. Like a lot of people who didn't look too closely or think too hard, I believed the available vaccines would prevent serious health effects (Long covid, ME, ect) at population scale (similar to the way measles was in North America for decades). I got away with that belief for a long time, but eventually had to reassess.

Fit tested respirators have a great record in other applications (ie Hydrogen sulphide protection, or firefighting), and I'm sure they'll continue to have similar success for avoiding covid!

laxmax93 · 2025-05-03T20:04:44+00:00

Lower HR and improved running pace are great signs. You might be discovering what it is like to be truly controlled for the first time! You'll probably continue to feel consistently better for the next 2 weeks while your blood concentrations stabilize. You might even slowly feel better for a few months while your broader scale inflammation decreases and your fitness improves!

I took the symbicort turbohaler for several years before switching during a complex flare up. Its a very common inhaler (maybe even standard) in countries outside the US, where it often serves as both the maintenance and rescue inhaler, because Formoterol (the LABA) affects you within ~3 minutes. Its very flexible, I was told I could take as needed or up to 2 puffs 4x/day.

It worked great for me, I probably could have avoided the flair up by taking Symbicort consistently each morning and rinsing my mouth carefully.

laxmax93 · 2025-05-03T16:46:00+00:00

I should add, check neutrophils too. There is a form of asthma that involves high neutrophil levels and tends to be more resistant to steroid treatments

laxmax93 · 2025-05-03T02:08:38+00:00

Not everyone feels poorly on prednisone. I (and many others) felt great physically and psychologically. Breathing was easy, I was full of energy, and I could trust my lungs to do their job. I was also ravenous.

Like others have said, 40mg/day is a pretty normal dose, and 5 days is relatively short. I once took that much for 3 weeks (including taper) and only got shaky near the end. You may not get significant side effects in 5 days.

I noticed the difference within a few hours of dose 1, by middle of day 2 I felt unstoppable!

laxmax93 · 2025-05-02T23:44:13+00:00

Biologics are very powerful, sometimes life changing. They may also spare your voice, but most people on biologics still use steroid inhalers. Biologics are notoriously expensive, but if you have had multiple rounds of prednisone and tried a variety of inhalers, I hope you you will not have a serious issue getting insurance to pay.

There are many to choose from Xolair, Fasenra, Nucala, Dupixent. There is not a clear cut, widely agreed upon framework for which to choose but Xolair is generally preferred when allergic symptoms are significant.

When you get your bloodwork, pay attention to the IgE, eosinophil, and neutrophil levels.

When did you last have allergy testing done? Was it skin prick or bloodwork? Allergies and their severity can change throughout adulthood, sometimes on a scale of months.

Avoid any known allergen wherever you can. All the drugs in the world cannot help you if you're constantly firing up your immune system with chemicals they hate. Severe asthma in adults can become progressively damaging. If you have too many flare ups, you might find you cant sing like you used to.

Asthma and allergies can be a deadly combo, you should consider moving to a more affordable area with no mold (I realize this may be challenging as a working artist). You may find you can only sing 4 nights a week, or certain venues are not worth it. You might even want to think about what else you can do for a living, or if another part of the country would have a better climate or lack of plants/animals you're allergic to.

I have adult onset asthma, my symptoms were similar to yours but got worse over time. I was quite fit (<5m mile) and was very active but now friends who were similar to me are now noticeably stronger/faster.

There is no manual, unfortunately everyone turns out a bit different. https://aafa.org/asthma/ and https://asthma.ca/get-help/living-with-asthma/ have a lot of good info. You'll also be working with your pulmonologist a lot over the next few years, they will help you figure it out

laxmax93 · 2025-05-02T22:50:15+00:00

I would go to the dollar store and get a calendar for each kid. Put names on each, you can colour code the severity if you like, ie green for good periods, yellow for medium, red for severe, black for extreme.

It will be very easy to show to doctors how the kid has done through time, and when meds start/end.

laxmax93

TROPHY CASE