Keeping the weight down despite asthma and prednisolone

[runcyclexcski]

Just wanted to share a most recent DIY project at my new flat after moving. I apologize for the long post.

I have poorly controlled asthma, and have to take large quantities of prednisone every couple of months to cope with breathing (I do not go to A&E much anymore, b.c. they do the same -- nebs and prednisone). This makes it difficult to stay fit, or at least to keep the weight under control. The doctors say that we should exercise, but my response to that is "yeah, right", We all know that every season has something to offer for the asthmatic -- it's the cold/dry/smoke-filled air in the winter, and pollen/pollution/ozone in the spring and the summer. Most of my 20 years living with asthma, I've been exercising outdoors in a full 3M respirator (as shown in the avatar pic), and even ran nordic ski marathons in a respirator. But as I get older it gets harder to breathe through the respirator during exercise. In addition, in the winter a respirator offers no protection from the cold/dry air. I further found that gyms have very poor air quality (smell of rubber, dust etc).

So I now mostly exercise at home on bike rollers (Zwift) with a DIY breathing machine. I believe I posted pictures of an early prototype here which I have since improved upon. It's been almost 2 years of me using the machine, and I have had no asthma attacks from it. This is unlike my attempts at outdoor exercise which, on average, have a 10% chance of me having to take prednisolone afterwards, despite a respirator.

The machine supplies the air at adjustable flow of 50-200 liters per minute which roughly matches the intensity. The air is warmed to 37C and is humidified to 70-80% -- conditioning which is known to alleviate symptoms of exercise-induced asthma (there are numerous papers on this on pubmed). The air is also purified with two HEPA filters (3M) and with a 1kg charcoal bed. Sensors are used to measure the particulates, temperature, air flow, and humidity of air supplied to the mask. I normally manage 150-200W for 30 min which (according to Zwift anyway) is about 350 kcal burned. This is modest compared to what I could do before asthma (when I raced bikes and marathons), but it does help to keep the weight under control, and the endorphin helps, too. It also adds to the safety factor -- I know if I start to get sick I can call an ambulance to my flat, rather to some random path in the woods. Well, I never got sick from the machine so far, so that's good.

In terms of things to improve, I still haven't figured out how to make the machine reduce the flow when I breathe out. Currently, one needs to breathes out against the air flow. It's not too difficult, but it gets old after 30 min. Need to implement a valve and a sensor that can divert the air when one breathes out.

The next step is to make the machine fit into a backpack, so that I can run or ski with it, if only 15-30 min at a time. I have tried air moisturizing/warming masks; they seem to help a bit, but they do not purify the air.

Medication-wise, I am on Xolair, 2 mg maintenance pred and Trimbow. They are putting me on Dupilumab to experiment. But I honestly have lost hope that I will ever be able to exercise outdoors w/o some air purification device.

[Patk1]

Wow!

[runcyclexcski in reply to Patk1]

Desperation is a good motivator :).

[Patk1 in reply to runcyclexcski]

I hope Yr able to minimise it and exercise outside again.you must miss it

[runcyclexcski in reply to Patk1]

Thanks! I do miss it, but even if I do not manage to miniaturize it, I am fine with Zwifting at home. Many people do it, even w/o asthma -- they got addicted during COVID!

[Poobah]

I'm so impressed by your ingenuity and your commitment. That looks absolutely brilliant. I'm not sure I could be that motivated if my asthma was as severe as yours, so I applaud your perseverance.

Dupilumab has proven to be very beneficial for asthmatics with high eosinophil counts, and I hope it proves a good treatment for you. Keep us posted.

[runcyclexcski in reply to Poobah]

Thank you, Poobah. My creativity goes up while I am on steroids, so I try to get things done while on them. I will see what Dupi does; my eos are high (when I am not on steroids), so is the total and non-specific IgE (no matter if I am on steroids), so Dupi will be a good experiment to try.

[risabel59]

Way to go!!! I am a zwift junkie. No pollen, No dust. Controllable environment and my peeps to chat with while cycling. I also love exercise outside, but I like the control.

Well done!!

[runcyclexcski]

Good to know that there are zwifters in here. :). I was thinking to get a velomobile and install an air purifier in it for the environmental control, but velomobiles are too expensive and generally not air tight at all!

[Homely2 Administrator]

Truly impressive.

I need to work out how to go hill walking again. The thing that gets me is the changes in atmosphere, one minute I am OK, the next my asthma gets triggerred.

In winter I am best walking in a wood, where the atmosphere is relatively constant.

I am off to the Lakes this weekend with old university friends, they will do the big tops, while I will do the wooded valleys, but until I go I do not know if can walk for half an hour or all day.

So I am starting to think, what I can use to help me get back walking the hills. Losing control when in the middle of nowhere on the hills is scary.

[runcyclexcski in reply to Homely2]

I used to do a lot of hill-running and hill-walking, with heavy backpacks etc. Going uphill was never a problem, but once the hill flattens out and/or turns into a downhill, the airways start to cool that's when the problems start. With well-controlled asthma it would only be a passing discomfort for 1-2 minutes; when the asthma is bad it would totally incapacitate me.

I tried this "lung plus" device recently -- lungplus.ch/index.php. It is supposed to re-capture the heat and the moisture from the air when one breathes out, and release them back when one breathes in. I tried it for 15 min while skiing; it was awkward holding the thing in my mouth, and I do not like mouth breathing. But I felt that it helped alleviate the symptoms a bit. The web site has studies, too.

[Homely2 Administrator in reply to runcyclexcski]

Thank you for this. I realised my health was getting serious doing a karrimor in the lakes in bad weather, we charged up the first hill, and then my lungs went coming down to honister pass.

I was starting to think I was the only one, going hillwalking with out of control asthma.

My wife has bought me this heavy weight quilted rohan jacket, along with decent waterproof trousers. They allow me to wait out and medicate an asthma attack without getting cold.

Lakes this weekend and Braemar in May

I have done around one hundred munros, and want to finish them. So once I get my walking fitness back I need to start experimenting with the exposed hill tops.

I think slow and well equipped, only in good weather, is the answer as opposed to fast and lightly equipped, regardless of weather.

[runcyclexcski in reply to Homely2]

<<

I had to do the same a couple of times during hill walking -- lying down while my wife would run down the mountain to fetch the car (we were next to a paved road thankfully). Since then I always carry an epipen as well.

Regarding how common this is: I do not know anyone whom I met in person who had this. Assuming one's nearest circle is say 1,000 people, we are one in a thousand or less. 1 in 1000 is 3 standard deviations from the mean. I.e. we are not common enough for a given doctor to see many of us in their lifetime, which is why, I think, doctors tend to dismiss us as making things up to "get attention" or having "panic attacks". On the internet, on the other hand, we gravitate towards a forum like this one -- many folk in this forum whose lungs are sensitive and cannot be controlled with medication.

[Muldrew]

fantastic very clever well done and good luck

[Itswonderful]

you are an inspiration runnycyclexski. When do you start the biologics? Please keep us informed of progress. I'm waiting for a start date too. I think your research into masks is commendable. You are so inventive and creative. I think your ideas could help many people. Have you thought of approaching anyone to get them developed?

[runcyclexcski in reply to Itswonderful]

Thank you, Itswonderful! I just had my first shot of Dupi last night, fingers crossed!

I showed several consultants pictures of the machine; they seemed amused and supportive, but nobody mentioned it was worth developing. I would need to get a patent first, and these are expensive. The university I worked for was not keen on investing their time and money into patents. It appeared that to them it was more about marketing than having a working prototype -- they would only spend their time patenting if there was already a company lined up to pay the license fees. Another issue is the cost -- the gizmo I built cost me at least 5K, b.c. I had to use off-the shelf over-engineered components. I am sure it could be built for under 1K with optimized components -- but this is still not cheap, and for most folks 2 puffs of the blue inhaler works just fine >>> businesses see no fortune to be made. Finally, I would need to run a small study with a medical research lab, but labs have their own ambitions/projects/grant deadlines.

So now I am thinking to publish the detailed plans of this and other stuff I've built on the web and pay for 10 years of hosting -- for anyone to use for free. Technically, anyone with minimal engineering skills could use the picture I posted above to reproduce the device.

[Itswonderful in reply to runcyclexcski]

glad to hear you've had your first biologic. I'm due my first next month. Yes, everything revolves around how much money can be made. It's the same everywhere which is not a good place for creatives and inventors to find themselves in. It stifles the process imo. But as you say, social media is a way for people with ideas to get them seen.

[runcyclexcski in reply to Itswonderful]

I hope you see an improvement, and, if not, that they can let you try another one. Somehow, compared to the UK, in Germany it's quite easy to get biologics and to try different ones. Ditto on spirometry: they take it every time one has an appointment, thus, there is a track record of the lung function. At the same time, everyday asthma management does not seem as well-organized as in the NHS (no asthma "action plan", no nurse hotlines etc). Every country has its peculiarities.

[Itswonderful in reply to runcyclexcski]

Yes I suppose it does. Will let you know on here on biologics go

[Gareth57]

it sounds like the valve you need would be the same as a scuba mask if you could get hold of one and connect it to the rest of your system

[runcyclexcski in reply to Gareth57]

Gareth, many thanks for the hint, I haven't thought about it. Should not be too difficult to get a replacement valve to experiment with.

[hilary39]

Impressive!

[DannyQ]

I've got say how impressive your machine looks and probablyperforms, I think your estimating your skills, thinking about you must be an engineer. I hope your looking into getting your design patented.

There is nothing better than staying fit as it definitely helps with the Asthma.

I'm pretty sure it wont be long before you've designed the machine to fit into a backpack

[runcyclexcski]

Thank you, DannyQ. Feedback I got here for this gizmo was very encouraging, so, perhaps, I will look into patenting. Although I instead keep improving things... definitely need to add the valve, as Gareth57 has suggested. Then a company could make it more affordable using dedicated components. I am not an engineer just picked things here and there while running a biochemistry lab, and I am sure a proper engineer would see the flaws right away.

[DannyQ in reply to runcyclexcski]

I've just noticed your German or your living in Germany which is the land of the engineers Haha Well with all the hard work you've put in so far it won't be long until you figure it out.

Good luck and hopefully you get it patented. Then you can have the satisfaction of helping others in a similar situation

[hoggies]

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