Hi all, thanks so much for your support and advice. It means a great deal to me. Can't thank you enough. I can provide a little bit more detail that I missed in my initial message. My alpha-1-AT result was within normal range at 1.55 (range 0.9 - 1.7). I also had a HRCT and there were no findings (no bronchiectasis, lung parenchyma preserved, trachea and major bronchi are clear, no focal pulmonary infiltrate). My RAST testing was positive to rye grass and dust mites but negative for aspergillus. I also had skin pinprick testing and was positive for rye, grass, plantain, birch, house dust mite, cat, histamine, plane tree). I had pathology autoantibody testing and this all came back normal. I was on a 3 week course of Prednisolone late last year when first diagnosed to try to lift my FEV1, but it made no difference at all.
My Vitamin D was just below normal when tested late last year and I now take one capsule a day which has brought it back within range. My specialist has put me onto n-Acetylcysteine (NAC) since the start of this week (600mg x 2 each day). Does anyone have any experience with NAC? Will it make any difference at all to my FEV1 scores? I did try Green Lipped Muscle Extract a couple of months ago (which I believe has a similar mechanism of action to Montelukast) but I ended up with an unusual rash on one side of my pelvis area, and my GP took me off it straight away.
I have so many questions running through my head all the time and it is hard when I only see my specialist every 4 months to be able to ask some of them. If I could throw the following questions out there, I'd be really thankful for any comments in return just so I feel more informed and hopefully less stressed/nervous:
* Is there any evidence to say that exercise can improve FEV1? Different respiratory specialists have told me different things, but my main specialist says that although exercise is great for cardiovascular health and keeping fit, it won't affect FEV1.
* Is there any chance that my FEV1 may improve to 75-80%? I'd feel so much better if it was at this level. I hear stories of people who "grow out of their asthma" in adulthood. My mum is one example. She was asthmatic in her 40's and even needed to be hospitalised once, but now that she is approaching 70 she has no symptoms at all. If I grow out of my asthma, is there a chance that my FEV1 may rise again? Or at least, can it happen that a person's FEV1 can stay stable for say a decade rather than declining? My specialist says that FEV1 won't start to fall until age 45-50, but all the information I can see online seems to suggest that it begins to fall at more like 25-30 years of age.
* One strange symptom that I have recently is large reflex involuntary inhalations, almost always when at rest. For example, I might be sitting watching TV just breathing normally and then all of a sudden I do a single large inhalation without any consideration. It has only been happening for the last couple of months. Has anyone else experienced this?
* With the information that I have provided, do you think I am simply asthmatic or does this sound like COPD? I have never smoked, have no known exposure to pollutants and have normal alpha-1-AT - but can a person as young as me still have COPD if these things do not apply? Part of my worry is because I have had congestion for the last 2 months, which I never had before. Is this also a symptom of asthma? Fortunately, I do not have any cough at all other than needing to clear my throat. Does COPD always show up on a HRCT?
* If I am at around 60% FEV1 now and am being managed on Symbicort, is it likely that I can maintain that level of 60% for the years and decades ahead, even though the absolute value will fall? I am confused because the normal FEV1 for a 33 year old male of my height/weight is 4.5L and for a 83 year old male it is 3L. So this tells me that if my FEV1 falls at a normal rate, I would lose 1.5L across 50 years. That means my FEV1 would fall from 2.6L to 1.1L at age 83. However, 1.1L is much less than 60% of the normal FEV1 of that age (3.0L). Can someone please explain how this works? Also, which value for FEV1 should I consider as the reference - my value pre- or post-bronchodilator?
* What is the lowest FEV1 percentage or absolute FEV1 value (for a male, 6 foot tall, 84kg) that I can be at before I really lose quality of life. Some of the posts above give me an idea that it can be quite low. Is there a value under which a person cannot live a normal life?
* Regarding dietary changes, is there one main food type that is most likely to exacerbate asthma that I should try do do without?
* I haven't had a bconchoscopy yet but I think I would benefit from one just so we can see exactly what is happening. I keep suggesting it to my specialist, but he is putting it off and saying maybe we will consider it next time. Is it necessary?
* Is peak expiratory flow important at all. Since I have started swimming my PEF seems to have improved according to my results even though my FEV1 is static. Does this mean anything?
Thanks again for all your comments so far. I have read them over a couple of times. Would love all your feedback on the questions above please. Cheers, Rich.