Severe asthma new here - Asthma Message Board

merlin298 · 02-26-2004, 07:57 PM

Hello all,
I am new here, just happened to find this board. It is wonderful that there is support from others that are going through the same things. I am 28 and have had asthma all mt life. It was bad as a young child but got better during my teens( was able to run track and cross country). Things started to get worse again about the age of 20. Since then it has been a downward spiral that has me pretty concerned.
I am currently on multiple medications including; advair 500/50 theophylline 300 mg twice a day, pulmicort .5 mg in neb 3 times a day, prednisone daily(anywhere from 10 mg to 80 mg), allegra d, nasonex, asteline, xopenex 1.25 mg, singulair, and xolair. Also on meds for cluster headaches verapamil and imitrex. I take all these meds(except xolair which is once/month)long with calcium &vitaminsdaily and still struggling. My last episode put me in the icu for 6 days on a ventilator. This really scared me when I found out. That was approximately a month ago and am still having daily symptoms that are worrisome. I have a great pulminologist that sees me every week to every two weeks. He is looking for other options etc. I seem to end up int the icu every two to six weeks, only having to be on a ventilator once, but bipap. heliox, continuous nebs, major steroids all the time. I almost taper off the steroids then it hits again. I have been on prednisone for over a year consistantly. My peak flows can range from not even being able to register to 400. The bad thing is that they can be all over in one day. I used to have a progressive decline until things got bad, now they just hit me all of a sudden. I an going to be evaluated for vocal cord dysfunction soon even though my pulm. doc doesn't think that is a problem, but "just to be sure".
Boy can I ramble,

I was just wondering if anyone had any other "clues" as to what might be going on. No GERD, but multiple allergies. I have oxygen at home to use if I get in trouble, but am supposed to call 911 if I feel that bad.
Anyway, enough about me. Thanks for having this place to come to. I hope to "get to kjnow some of you" and thanks for letting me ramble, but I am pretty confused and scared.

Take care all, Sandra ( btw my chihuahua's name is Merlin)

monacks · 02-26-2004, 09:39 PM

Welcome Sandra,

These boards are great and very helpful. Sounds like you're on a lot of meds. It gets hard to keep track sometimes, doesn't it. I'm on Advair 500/50, Singulair, Allegra, Atrovent and Albuterol as needed. I also have Rhinocort when I feel I need it. And I take stuff for my blood pressure and cholesterol, as well as motrin quite a few times per week for headaches. And right now I'm on prednisone for 2 weeks. And of course the nebulizer, but I only use that when I get bronchitis, every few months. Someone suggested to me today that I take way too much medicine and that I should see a homepathic doctor and detoxify and build up my immune system. I think I'm too scared to do that. I don't need to go in the hospital. Sorry, I don't have any suggestions for you, but wanted to let you know that you're not alone. There's quite a few of us out there suffering.

PinkBananaz · 02-27-2004, 12:42 AM

So the xolair doesn't help you any? really? I've heard several rave stories about how it was just the "miracle drug" for some people's severe asthma.
It sounds like you've actually got some airway remodeling, which isn't really good. Actually.. it's really bad. Meaning it sounds like your airways have been inflammed for so long, they have remodeled themselves and have scar tissue and air trapped. Have you had a CT scan to find that? Because it sounds like it's definitly more than asthma and allergies. I saw an article once about how severe childhood steroid resistant asthma was due to how the lungs were shaped, not the asthma. Maybe you have something like that. Do you have other conditions that complicate it possibly..anemia, pulmonary valve dysfunction, heart murmurs/failure, thyroid disorders, etc?
Might be worth looking into. Are you able to exercise? Your lungs could probably benefit from daily, light exercise done in the right conditions. My boyfriend had severe asthma until he did allergy shots along with accupuncture, and now his asthma is nonexistant. might be somethin worth lookin into, i hear accupuncture can be great for asthma. also, have you considered being evaluated at national jewish? hotchic goes there for her severe asthma, I know she highly recommends it. I'm considering taking a trip there if I go off to college next year to help me get a better handle on my asthma while i'm on my own. I thought I was considered severe until I read your post lol, I do fluctuate a lot though, from my asthma feeling like it's not that bad, to being bedridden because walking will make me cough up a lung(well not literally lol) or I won't make it to wherever I go without losing my breath. but yeah stay on the boards we are all here to keep each other from completley losing it, it has really helped me in bad times to talk to others who completely understand.

byrdwoman · 02-27-2004, 01:28 AM

WOW!! I won't be complaining anymore. I feel so sorry for you. I am new here to. Lately i have been posting my latest battle with my asthma not being in control and im scared. Seriously i am scared to have my asthma take a turn for the worse. Only because this last battle was that a hell of a battle. I couldn't imagine going through this on a monthly or weekly basis. I could not imagine. Im in shock to read your post. I feel sorry for you. What i have to say when i am struggling to breathe is this won't last forever. Im sure you say that all the time too! We have to be strong and positive. You poor thing. I truly hope they find your trigger. It has to be something that will be found and your asthma will be back to being managed. Your life will be well lived again. Your only 28yrs old. Just keep up faith and continue on this board. I am learning new things daily reading through them. Someone out there is or was going through exactly what you are. Keep the faith honey...
I'll lock you in my prayers.
Jane

reader1 · 02-27-2004, 04:39 AM

Why Xolair only once a month? What are your IgE scores? Xolair dosages are also weight-based, so maybe you're under 135 lbs? (Probably not if you take that much prednisone.)

I have been steroid-free, antibiotic-free and nebulizer-free for 2 months. I have been on Xolair for 4 months. I am hoping you will see enough improvement to discontinue the oral pred and theophylline use. I hate both, but particularly theophylline, which I have refused to take since I was 18.

So sorry to hear you're feeling so badly. I know how it is.