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Not coping well with asthma

Nov 01, 2009 - 12 comments

I'm not dealing well these days with my asthma. I was told by my specialist that I have to live with daily symptoms as they are not considered detrimental as I am on the highest inhaled steroid dose allowed over a long term basis. It's hard as most days I spend my mornings coughing up all of the excess mucous in my lungs that have accumulated over night. Then there are days of asthma symptoms on top of that. I was told to just keep taking reliever medicine, such as my Oxeze to relieve symptoms. I'm taking 1600 ug/day of pulmicort with 3 x puffs of Oxeze 12 ug/day.

I feel tired a lot because of the daily coughing, chest tightness and occasional shortness of breath. My day is busy as it is and I need to be functioning a 100% at work, and these days my boss is complaining about my work as I am not as sharp as I used to be. What happens then is my sleep becomes disrupted because I am way over tired trying to perform as "normal" and then it becomes this crazy vicious cycle of bad sleep due to sheer exhaustion and very little stress tolerance.

I don't know how long I can keep this up. I've been thinking about changing some of my daily activity, so that I"m not dead at the end of every day. Also my weekends are spent doing house cleaning because it has all caught up from the course of the week. And this results in more exhaustion because of trying to catch up on the weekends. I just can't seem to function at the levels I used to . And is this normal? I thought that asthma treatment was supposed to make life functional. Has my asthma gotten so bad? I was also told that there had to be a balance between the side effects of the drugs to the amount of acceptable symptoms. this is hard and not something i"m used to at all.

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746512 tn?1388807580
by Tammy2009, Nov 03, 2009
I know what you mean.  My asthma seems to be getting worse and worse over the past couple of months.  I was hoping the allergy shots would make it go away because I had almost no symptoms over June and beginning of July.  Then we started moving at work and clouds of dust formed (Tammy couldn't breathe) then volunteering in August and lived in the basement of someone that was very humid and 30 year old bed probably full of dust mites (Tammy couldn't breathe), they at my aunt's house which was very dusty (Tammy couldn't breathe) but now I've been home since beginning of october and I'm worse now!!

Do you know what triggers your symptoms?  Allergies?  Since I'm allergic to dust mites and cats, the more cleaning that is done regularly (including bathing the cats) the better I am.  Nasal rinsing helped me greatly until now that I'm so congested it won't drain through properly.  

It is the muscous I think that is soooo draining.  The more muscous I have the worse I feel.  I can live with some symptoms of chest tightness as long as they come and go.  The constant muscous makes breathing harder and takes so much more energy.  I tried guaifensin cough syrup and it helped but the bottle only lasted for 3 days since I had to double dose to get enough relief, and it already was extra strength.  Maybe you could try that or talk to your doctor to see if there is anything that would help the muscous.  

942934 tn?1268108382
by Victoireh, Nov 03, 2009
My asthma went south a year ago after a flu, then I acquired a bacterial lung infection due to so much mucous present in the lungs (could feel it rattling around for 3 days before a fever set in). I've been visiting the specialist every 2 months for this since. I have had asthma most of my life, but I think I slightly damaged my lungs with these last infections. She said that as long as the mucous kept moving out from the lungs and it's not damaging then I had to live with it.

I don't like being on the high doses of steroid, but I've gone through all the normal steps. I have allergies to dust mites, molds, cats, feathers and I can't remember what else. I keep my house spotless for this reason. My sinuses are good. I don't have GERD (was tested recently). I used Symbicort 200 for a number of years after my allergies and sinuses were dealt with and had no problems. I always stepped up from summer to winter in puffs/day from 2 to 4 and it controlled for the most part my symptoms.

I have been told that i have difficult asthma. My asthma went into remission in my late teens into my early 20's. Then when I was pregnant with my daughter it came back worse then before. go figure! I'm sure with time you will get a grasp of your asthma. Have you had your total IGE in your blood tested? Apparently if it's high enough, there is other treatment to help the excessive allergy reaction going on in your body. My numbers weren't high enough, so the specialist said that this is what i have to deal with at this point.

Avatar universal
by choo_choo, Nov 03, 2009
I've had asthma for a long time...I really think it went away for a while and then started again in my mid-twenties.  I've lived my life in ignorance, but in misery with bad allergies and breathing issues for the past 10 years.  I sought treatment a few months ago because I just couldn't deal with it anymore.  

The problem is that I'm having some adjustment issues and I'm getting really frustrated.  My partner doesn't seem to get it even though I've tried to explain it to her.  I have really bad night asthma and allergies make it way worse...if it's not controlled I barely function the next day.  I also have problems during the day due to allergies and other irritants.

This week we're out of town for a big rabbit convention/show.  We're staying in hotel and there is something in the room that's seriously bothering me.  It's so bad that even with the Symbicort, my rescue inhaler doesn't work and I had to call the oncall doctor at my clinic.  I don't want to go to the ER every night to be treated.  Now I have to take more medication and go to the clinic when I get back.  The first time I went into the rabbit barn (a huge building-well ventilated-with about 13,000 rabbits) I couldn't breathe after about 5 min.  We went to a restaruant and I had a major coughing episode.  I took a shower last night and hacked up a ton of mucus that had been floating around all day.  Etc.  It's so frustrating.  My partner doesn't understand that these things make me feel awful.  She doesn't understand why I've been "so quiet" and "not eating", etc.  She doesn't get that managing my asthma has been a real adjustment for me.  There has never been a cause and effect for me.  I don't think she understands why now I'm having "problems" with it and before I didn't.  The only thing she really recognizes is the problems I have at night and the only reason she recognizes that is because it's had such an impact on my life.  I have no idea if I'm making any sense.  I thought the doctor would give me some medication and it would all go away.  It doesn't work that way, does it?  I had no idea that this would change my life in the ways that it has.  I won't lie, the medications help a lot...I'm far less miserable than I have been in many years.  But they and the implications of asthma add complexity to my life and I find myself frustrated at times.

Sorry for the long vent, but I just had to let it out because I'm about to burst.

Avatar universal
by choo_choo, Nov 05, 2009
I feel silly for leaving such a weird post on your tracker.  I'm not sure what came over me...I was just extremely frustrated.  I went to the doctor after I came home and had lung function tests done.  They've improved a lot since I started Symbicort, but I'm still affected by allergies, so the dose was increased to help guard against that.  I have allergy testing at the end of the month so I'm hoping we can go from there and get the allergies under control because that will make a big difference for me.  
If you have any advice or anything, let me know because I'd love to hear it.

Thanks.  

942934 tn?1268108382
by Victoireh, Nov 05, 2009
Yes, allergy testing is a very good idea, as then you know which ones are your triggers and what you can do to help control them. If you have sensitization to dust mites, which most people do, then I would recommend that you make your sleeping area as clean as possible. Afterall, the bed is where we spend an aweful lot of time in. Cover your mattress and pillows and wash your bedding once a week in hot water. Also get rid of old carpeting and keep dust collectors including animals out of your bedroom, especially if you have cat/dog allergies too!

Symbicort from my experience works excellent. Here in Canada we are also allowed to use up to 8 puffs/day to control symptoms. Basically you take an extra puff when you feel your lungs reacting. When I had my allergies under control and my sinuses dealt with I actually was able to use only 2 puffs/day in the summer and 4/puffs/day in the winter of my Symbicort 200. And I rarely experienced any asthma symptoms for about 5 or 6 years. It was nice.

GERD is another condition that aggravates asthma and if you have any symptoms such as reflux, it is a good idea to check it out. As with anything once the aggravator is dealt with then the asthma is so much happier.

Avatar universal
by choo_choo, Nov 05, 2009
I'm certain I have a significant problem with dust mites and cat dander.  I'm not sure what else I'm allergic to, but I'm pretty sure there quite a few things because I was sick 24/7, even with allergy pills, until I started Xyzal and Nasacort.  I still get some allergies, but most of the responses are blunted, some are still off the chart (like cats and dust).  
  
Thank you very much for the hints.  My house doesn't have carpeting...all wood floors, but they do collect a lot of dust bunnies.  All dust bunnies should be spayed and nuetered ;)  I usually wash in cold water, but I will wash bedding in hot water.  

I'm glad Symbicort worked so well for you.  I hope it works that well for me when I get my allergies figured out.  You use Symbicort as a rescue inhaler instead of Proventil HFA or ProAir?  (Albuterol) Interesting.  The bronchodilator does work pretty quickly...the package says 15 min, but it seems like it works faster than that.  Is it bad to use that much of the steroid?  

In the past I've had issues with GERD.  I wasn't aware of the GERD/asthma trigger connection.  I'll seek treatment if I start having GERD symptoms again.

I'm learning a lot, but there is more to be learned.  Thanks.

942934 tn?1268108382
by Victoireh, Nov 05, 2009
Up to 1000ug/day of steroid for adults on a long term basis is considered safe from any major side effects. The long acting bronchodilator of Symbicort is almost as fast acting as your albuterol or ventolin. I was told by my specialist that 1 puff of that is equivalent to 2 puffs of your fast acting stuff.

My asthma is mostly in control and I've progressed to taking Pulmicort 400ug with Oxeze 12ug, these are the two components in Symbicort 200, but stronger. Apparently here in Canada they don't sell Symbicort 400, so I had to break it apart into the two inhalers. I also use the oxeze as my emergency inhaler and have noticed that it is easier to inhale as it is a dry powder inhaler and is twice the strength of the one in Symbicort 200. I was told that I can't take more then the 1600ug/day, as it is considered the maximum reccomended daily dose over the long term. I guess that is the maximum before you start getting serious steroid side effects, such as bruising, osteoporosis etc.

So I think you're pretty safe on the dose you currently are on. It is better to have your asthma in control, otherwise you have poor quality of life and you are at risk then of damaging your airways with prolonged excessive airway inflammation. There are always trade offs. That is how they decide on the inhaled steroid doses. But if you can take other measures to reduce your exposure to various irritants then you're doing yourself a favour in the long run.

Avatar universal
by choo_choo, Nov 06, 2009
My quality of life before I started medication was awful.  So much has improved since I've started using the medication, it's just amazing.  My life is completely different.  It's been at least 10 years since I've last felt like this.  
What I take is equivalent to Symbicort 200, but it isn't powdered.  (2 puffs twice a day)  So, from what you said, I'm ok because I'm using 640ug/day of steroid.  
When my doctor first prescribed Symbicort, she explained the difference between the two types of medications (the steroid and the long acting bronchodilator).  When she increased the dose, she explained the reason I needed a dose increase.  She also explained what probably would have happened if I hadn't been using Symbicort while I was out of town...I guess she thought that was something I needed to hear.  I have a pretty good understanding of the trade-offs.  I'm making an effort to limit my exposure to irritants.  It's a little hard because there are other people in my household who aren't being very sensitive to my requests and needs.  They think that as long as I'm using medication and not having "problems" that it is ok for the cat to sleep on the bed at night or to have a house full of dust bunnies.                

1135961 tn?1279145314
by SRreporter, Dec 11, 2009
When I was a kid I was diagnosed with asthma . My doctor said that it wasnt severe and that it would get better as I grew older. Growing up my asthma was never a problem, I only had to deal with it if I had a cold or allergic reactions. I used two inhalers that worked,and managed my asthma well. When I was 15 I stopped getting symptoms alltogether,and this continued for 3 years. This year I moved to another country with a cold climate, and started to have coughing and wheezing fits. I also noticed some pain in my chest , and the feeling that im sufacating. So I went to see a doctor, and he told me to use my inhalers everyday. That didnt help much either, and I started getting worse and worse. So I  went to see another doctor , and she put me on Advair, Atrovent , cortizone, Singulair. And now all of a sudden its like I have chronich( severe) Asthma , and cant do without medication!
I find this all hard to take in ? What happened ? Is this possible? I hope you can give me your opinion.

942934 tn?1268108382
by Victoireh, Dec 11, 2009
Hi SRreporter,
I have had a similar experience. I too had mild asthma, outgrew it then when I was pregnant at 24, the asthma came back and more. I also noticed that different climates produce different reactions. For instance I live now mostly in a really wet winter climate, where it doesn't get much below 0 C. The high humidity encourages mold and and dust mite growth, both of which are allergens for me. Also cold air affects my asthma, so I need to use more steroid inhaler in the winter season versus summer season. For many women, hormones play a factor. Some have more asthma during their menstrual cycles. Pregnancy also affects asthma. 1/3 of women get worse during pregnancy, another 1/3 stay the same and the remaining 1/3 actually get better.

I have read up the males tend to outgrow their asthma and stay remain so, where as girls tend to get it later or outgrow it, but often it will come back later on. I do believe as many as 50% of asthmatics who go into remission get it back in their 20's.

You don't mention though if this new inhaler treatment is working for you? Your doctor will try to stabilize your asthma first before weaning you down to the minimum drug level to control your symptoms. Also you may get further testing to determine what is aggravating your asthma (making it difficult to control), which can be anything from unknown allergies, GERD, to sinusitis. The most important thing is to continue to work with your doctor to achieve asthma control.

I hope this helps.

Victoire

1135961 tn?1279145314
by SRreporter, Dec 12, 2009
Hi,
Thanks very much for your reply. The first month I took the inhalesr it didnt make a significant diffrence.It is my first semester in college , and I got really stressed, because I was tired all the time, and couldnt sleep from all the coughing. I refused to accept that my asthma came back, so I did a pretty unsmart move and Im ashamed to admit this, I lowered the dosage !,thinking it didnt make a diffrence either way. But cleary it did! The minute I finished my inhaler, I started to get worse. Now im in my second month on medications , and on a resolutions to do better. I use my meds on time, and so far things are looking up , and my symptoms are much better!  Your advice was very helpful.
Thanks again,
SRreporter

Avatar universal
by jsycz, Jul 19, 2015
Hello Everyone. I am sure you are all still suffering from your Allergic Asthma symptoms and there is a relatively new drug on the market that came out last year called Xolair. It is an injectable medication and is very expensive, but insurance covers almost all of it and there is an awesome copay card.

You cannot be on Beta Blockers (propranolol, Atenolol, Coreg, etc while on this as this will block most of any epinephrine if you ever get an anaphylactic reaction.  

Just thought you all might want to know that you all can achieve better results in time and with research of new drugs when they come out. NO one should have to just live with it because their doctor is giving up.

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