I recently saw a severe asthma specialist who prescribed me inhaled bicarbonate to use with my nebulizer (it's in liquid form) when my asthma is flaring. I have done it a few days in a row and have been pleasantly surprised by how nice it feels. It's not a replacement for ventolin but the idea is it helps reduce inflammation in asthmatics since we can't fully exhale out the carbon dioxide in our lungs which is acidic. It neutralizes the CO2 and acts like a base layer on our lungs.
Just thought I'd share because I'd never heard of it and I appreciate any and all new remedies since there aren't many for us here at the end of the road with severe asthma who are already on (or have already tried) most existing meds.
And just for context, this doctor is at the CHU in Montpellier, France which has a giant severe asthma and pulmonary wing and even a nutritionist on staff since so many severe asthmatics have secondary adrenal insufficiency and need counseling on how to eat differently as well as a psychologist who specializes in severe asthma / trauma from frequent hospitalizations. It's a totally amazing institution.
Just thought I'd share
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hilary39
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That's really interesting Hilary - thanks for sharing! I've never come across this even with keeping an eye on asthma papers for work (admittedly not more than I have to as I prefer not to work too much in asthma, it's weird).
Glad your appointment went well and you got something helpful from it - I hope it keeps being useful! Do you find it easier side effect wise? I love the relief from Ventolin but the shakiness is annoying and I find a lot of nebs back to back are not fun even if they do the trick. I wonder if this may be a possible alternative to steroids if it's reducing inflammation - would be amazing if so, especially as it's more targeted to the lungs.
I'm so glad you had a good experience there. I find these appointments terrifying after past experiences (I need the psychologist for trauma of clinic, never mind hospitalisations - and that sadly isn't even a joke, I had to find one not attached to the clinic for that reason. I read a paper somewhere on how medical trauma isn't always from 'big' stuff like very severe attacks or ITU, it can also come from repeated difficult encounters with the system and not getting help/being dismissed. It was based on Ehlers-Danlos which is often a difficult diagnostic process, but could apply to other chronic and atypical illness too).
I also didn't think of diet as it relates to AI - no one ever mentioned anything about that, and I tended to think the dietitians were more for pred issues or diabetes from steroids. What did they say was needed for AI?
It was a fascinating visit. I had my spirometry and FeNO tests then a biopsy of my nose then a consultation with the nutritionist then meetings with a few interns then a sit down with a pulmonologist and his team for 45+ minutes then the therapist. And they even brought me a fabulous fish stew in the middle of the day I hadn't been expecting ANY of that, I just thought I was going to have a consult with the pulm so I was blown away.
As to the nutritionist--her point was that since daily steroids change how our bodies metabolize sugars and can cause insulin resistance much like with diabetes, we need to really focus on eating veggies, protein, make sure we eat fruit with other food so the sugar doesn't spike and really limit carbs and alcohol. All my AI support groups (including a weight loss one) say the same thing but it was refreshing to hear from a doctor as my endo insists steroids can't cause weight gain when they're a replacement dose which is so frustrating and invalidating of the 8 kg I've put on since I started hydrocortisone even though I eat a lot less than I did before (also my AI weight loss group has 7,000+ members!)
As to the trauma, oof. What a complex topic. I think we get traumatized by so many things. Feeling awful so frequently, hospitalizations, side effects of meds, harried doctors who don't understand what's going on with us, misdiagnoses, struggles at work, friends and family who are confused by (and sometimes judge) why we look ok but feel so awful, worrying we can't parent as well as we wish we could, and on and on...
I was just reading only 30% of med schools even teach about ME/CFS. It's not surprising the diagnosis process is so fraught!
As to the bicarbonate--zero side effects! It tingles a little more than ventolin but no heart pounding and general adrenaline-rush-feeling afterward like with a ventolin neb.
Thank you for sharing your experience Hilary, it's so interesting and good to hear that you've had such a positive response to inhaled bicarbonate. I'd never heard of this, but having Googled it, it's definitely something that has been used for other lung diseases successfully, so why not asthma.
I know that there's a European Respiratory Society and European Medicine Agency that publish guidance on the diagnosis and treatment of asthma, so the fact that France is using nebulised bicarbonate suggests that this treatment may eventually become more mainstream if it proves beneficial to enough patients.
I'm impressed by the level of service that you received in one day! Gold standard stuff.
Ah yes ok--I should be clear that the experience at Montpellier was so bizarrely comprehensive and well-organized that it shocked me.
I actually flew to the hospital (it's an 8-hour drive from us) out of desperation as my current pulmonologist is clueless about severe asthma and keeps insisting I have issues with reflux and hyperventilation even though I took anti-reflux pills for months (they didn't help) and went to respiratory physical therapy 15+ times and am doing all my breathing exercises (and they're not helping). Meanwhile, I've had the worst year of my life with my asthma. I've been on pred nonstop, had horrible exacerbations just from being around people with pet hair on their clothes, and was basically bedridden for a month + after a bout with RSV.
I am a patient rep for the European Lung Foundation (ELF) and met the specialist in Montpellier through the org so that was how I wound up at that hospital.
My visit there was NOT the usual French experience. I have seen several pulms in France over the years and typically, the appointments are 5 minutes long and not particularly helpful.
All that is to say that even though I didn't get much new information out of the day in Montpellier, I was very aware the entire time how lucky I was to be getting that kind of care!
(The ELF works a lot with the hospital in Southampton and I've met a few excellent doctors there in case that's helpful at all-)
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