Jumping back into the ring

After a 4 year break, Im back to doing monthly visits over at the UCSF severe asthma clinic. Im super lucky, because my doctor there is John Fahy MD, a colleague of Dr Wenzel and one of the principal investigators for the SARP program, for which I’m also patient research subject.

To get right to the point, there’s still not a lot out there in terms of new treatment options for people with severe non-eosinophilic type asthma, so you brainstorm with a pulmonologist who knows their stuff and you work with what you have. Here are 3 plans we’ve come up with so far:

#1 Go back on a low maintenance does of Predinsone, 10mg/day.
#2 Try Mucomyst
#3 Considering starting Xolair injections again.

As far as option #1 goes, I understand the rationale behind prednisone maintenance dosing, and how it’s easier on the body than constantly cycling on and off the drug, but when it comes to steroids in general, Im very standoff-ish. Like many asthmatics, I hate them…Ive had way too many serious problems while on the drug for long periods. I dislike it so much in fact, that Ive made a conscience decision not to take the drug for exacerbations unless Im critically ill, and even then, I rapidly taper off as soon as Im out of the danger zone. I would rather be short of breath most of the time, than to deal with the negative physical and psychological side effects of the drug. That said, I guess it’s no surprise that I probably wont be doing option #1. (Even my Pulmonologist knew I wouldn’t go for it, but he had to at least throw it out there.)

Moving on to #2, It’s pretty obvious that smooth muscle/airway hypersensitivity isn’t at the root of all my asthma problems. Like most with chronic lungers, I also have a problem with air trapping which makes my asthma symptoms worse. Ive long suspected (and it’s recently been proven) that people with severe asthma have a problem with thick mucus blocking the smaller airways in the periphery of their lungs. This can cause air to become trapped, which can make exhaling difficult and in turn can cause increased breathlessness. I rarely cough, even during a bad attack, and I never produce what I would consider a measurable amt of phlegm, but for sometime now Ive noticed that immediately following a prolonged bout of air trapping, I find myself having to constantly clear my throat. If I work hard enough at it, I’ll usually bring up tiny amounts of clear, thick, gelatinous mucus plugs. If I could look into my lungs Id bet that these tiny mucus plugs were once lodged in my smaller airways, which would certainly explain the cause of my air trapping and why bronchodilator drugs like Albuterol aren’t effective in treating the breathlessness associated with it ( Did I loose you yet?). Yes, I think mucus thinners such as Acytelcysteine ( Mucomyst) might play a role in treating difficult asthma and the air trapping associated with it. The problem for some, is that Mucomyst can be vary irritating when inhaled. Kinda of a catch 22, but Im willing to give it a try. ( Btw, Acytelcysteine is also the antidote for Tylenol overdose.)

Another option is Xolair. Even though, I dont have what is considered typical “allergic asthma” ( my IgE and Eosinophil levels are usually normal), Im very allergic to certain things in the environment, which are huge triggers and make my asthma worse. So the Xolair therapy would be kind of a second-layer of defense kind of thing for me. I was actually on the drug 8 years ago for an entire year. I decided to stop getting the injections because I didnt notice a significant improvement in my asthma over the course of that year. So why try again? Well, a lot has been learned in the 8 years since the drugs has been out there. The dose I was on at the time may not have been high enough. And though I may have not have seen a significant reduction in the number exacerbations, the severity of those exacerbations were probably less and the hospital stays shorter. My living environment is much different now as well. When I was on the drug previously, I lived in San Francisco near the ocean where the air was cleaner. Now I live inland and am exposed to much more allergens. Again, Im willing to try anything that will give me a better quality of life, even if just minor.

So, that’s latest as far as new treatment plans for me go. It’s been several years since Ive really had a desire to jump back into the ring and actively tackle this disease again. You go through periods where it’s very difficult to remain upbeat and optimistic when you know there’s nothing that can really be done for you. But, if you’re a fighter like me, you jump back on the wagon now and then and give it another shot. Because if you don’t, the disease will always win.

Update as of Oct 6th, 2015 Epic fail on the nebulized Mucomyst. My airways are more sensitive than I thought. Even mixed with Albuterol, a few minutes into the treatment I developed pretty bad bronchospasm, which took hours to reverse. We decided not to continue with the Mucomyst treatment. The risks, at least for me,outweigh any potential benefit. It’s too bad, because I really think the drug may have helped had I been able to tolerate it. Interestingly, Dr Fahy’s lab is working on developing a mucolytic that is safer and better tolerated by asthmatics, but it probably wont be ready for several more years.

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3 thoughts on “Jumping back into the ring

  1. Good evening Stephen
    Seems like ages since your last posting, or maybe I missed it?
    Soooooo sorry about the drugs not working out for you.
    Bit of a bugger. (My iPad didn’t like that word, kept insisting that really I should write “bigger” or “better” I finally won and it reluctantly let me. I think it’s sulking. Went offline.)
    Not a lot of progress on my diagnosis. I think it’s Obliterative Bronchiolitis. I’m now waiting for my LLC (lovely lung consultant) to get back to me.
    Love and hugs, very gentle ones so as not to upset your tender lungs,
    Kate xxxx

  2. I get a lot of mucus and throat clearing as well. My local pulmo has had me using an incentive spirometer to try and “pop” the airways open.

    1. If it works, more power to you.

      It’s doesn’t work for me because my FRC ( functional residual capacity) is too high. At baseline my lungs are already over-inflated, so taking deep breaths just makes things worse for me.

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