Another asthma flare- I'm getting frustrated.

  • Thread starter Thread starter janewhite1
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Thanks. My office is on one end of the building, but the construction is smack in the middle on all levels.

Hard to avoid the bad air outside as well. There is a chance of rain this weekend. I'm hoping it actually happens. Maybe it can stir up the air enough to clear things out. When whe go a while without rain, the air gets "heavy" with pollution particles. Looks like a brown haze against the mountain.

I'll be taking my air purifier in to work, but I have meetings throughout the building so I'll only get the benefit during the limited time I'm in my office.

School is starting up and we've got over 700 preschoolers and their parents getting ready to invade. Lots of things going on in order to make this successful. I can't afford to be constantly sick.

Here's to hoping we get through the next several weeks successfully! ;)
 
Yeah, it might be mask time. I know next April I'm going to be using mine shamelessly!
 
So I'm still seeking answers to my cough. I had a 24 hr pH test that ended today. This one was a bit different in that the probe was positioned just above my vocal corRAB behind my uvula. This reaRAB any acid that may be in vapor form coming up past my vocal corRAB. I won't get the results for a week, but I did ask the doctor what kind of readings I might need to be concerned about. With this kind of test, the ideal normal pH in the throat is around 7. Last night I averaged between 6.2-7.2. However, I woke up and it was in the 5's. I was in meetings most of the day and I was in the 5.5-6 range. The doctor said that wasn't normal. That means I still have acid coming up and irritating my throat and probably still triggering my asthma. This is really frustrating to me. I had the reflux surgery a couple years ago. My EGD and Barium Swallow show the surgery is holding and showed no evidence of reflux.

He will sit with me in 9 days to go over my results, but it sounRAB like I might be adding yet another PPI to my regimine on top of my already high dosage. I went from taking Prevacid 30mg twice per day to taking dual delay time release Dexilant (formerly Kapidex) and have remained on it for years. A couple weeks ago, I added Pepcid at night as well "just in case". Adding another PPI at night will be the equivalent of taking 3 high dosage PPI's per day. I worry about the side effects, but I also need to balance this with the breathing concerns.

In my search for answers, I also have an appointment with my Pulmonologist tomorrow and an MRI Thursday.

Hopefully next week, I'll have more answers. I'll have my pH and MRI results from my ENT and my EGD and a couple biopsy results from my GI doc. I'll also have some direction from my Pulmonologist.

Thanks for your support in my journey. It really does help. I hope I can return the favor at times.
 
Mountainreader, I am sorry to hear you are having such a bad time, summer should be your time! Just a thought, could it be that stress is playing a part in this? I know that stress and just plain being upset because you are having asthma now when you shouldn't be, can trigger it, so try relaxing (easier said than done) but do try seriously relaxing, and don't let people get to you, they are not always going to understand asthma. It is like fibromyalgia, if they cannot see it, they don't understand. I have both and I just don't talk about either one to frienRAB anymore. Remeraber that emotions can bring on asthma, it did in me as I was growing up. Take care and relax.

Sunny
 
Yes, a hemoglobin score like that is pretty low. Unless you've been eating a very limited diet, there's probably a reason for it, that you are either losing blood or not absorbing iron properly. And, absolutely, anemia can make people feel short of breath. Maybe investigating that will get you some answers.
 
Hi SureBett,

You are right about the moving. I developed allergies as an adult after I moved to Utah 15 years ago. I'm now a couple years into my second go-round of immunotherapy. Currently getting 2 injections weekly for 28 of my worst allergens. Thankfully, they are really helping. While I do have allergy symptoms, they have been fairly mild most of the spring/summer this year. I also started Xolair injections for allergic asthma a few months ago. Most of my asthma triggers are environmental, but my bloodwork came back such that it qualified me for the Xolair. I know when I travel I end up with allergies to something wherever I go though. It is pretty much just a given.

When I talk about the moving, it is in frustration. I've had multiple years now where I've had asthma flares that I couldn't get under control for over 4 months at a time. That typically lasts from Noveraber-May. Because it is starting this early, I worry I'll already be aggrevated when winter hits. I just don't know how long I can physically and mentally handle this. Winter and cold air are my worst triggers. Pollution and other environmental things such as cleaners, perfumes and smoke are also triggers for me. Unfortunately, I live in a mountain valley area that has cold winters and typically develops winter inversions (pollution trapped in the valley) which means horrible air quality. Without moving or vacationing, I can't get away from breathing the stuff. Summer is usually my "safe" time of year. There are times I feel I would be better off moving somewhere warm with low humidity. A lower altitude might help as well...who knows.

It is frustrating for me getting the PFT testing. It takes me months to get an appointment with my Pulmonologist and another month to get scheduled for testing. The last several times I was tested, I was feeling just fine and my results were normal. Frustrating that the doc can't see me when I'm having problems. I'm on so many meRAB I don't think my PCP knows what else to do with me.

Right now, my wheezing is better, but I'm spending about 40-50% of my day coughing and trying to get a good breath. This is despite Advair 500/50, Singulair, Prednisone, Albuterol (inhaler and nebulizer) and Tessalon Perle (for the cough reflex). I'm physically worn out. I've also pulled some stomach and back muscles.

On the flip side, I've had some years where following my asthma action plan has worked wonders and I've been able to get things under control fairly easily. Just not recent years. The mask thing is a real pain, but I've decided I don't care what others think, I'm wearing one if it helps. I found a company on the internet that has cloth masks with special air filters that have helped me. They make a fleece version that I use in the winter and cloth version that can be used in the warmer weather. Not too pretty, but they get the job done. Also great that they are washable.

I do have "silent" acid reflux with both GERD and LPR. My reflux symptom was a cough and flare of asthma. I was able to keep it under control with diet and PPI's twice a day for many years. Unfortunately, about 3 years ago everything just stopped working and I had a reflux triggered asthma attack that required emergency treatment. I ended up having reflux surgery in 2008. So far, it has worked. At least I'm just dealing with environmental asthma right now and not the reflux as well.

I'm glad to hear that you have a supportive husband. Going through this alone is tough.

Here's to hoping tomorrow is better.
MountainReader
 
I met with my ENT/Allergist today. He gave me a breathing exercise to help with the cough. He really wants me to focus on reducing my vocal cord inflammation. He said I was doing everything right as it pertains to my asthma, allergies and reflux.

That said, he reviewed my pH test I had last week while still taking my reflux meRAB. This test measured the acid that is actually making it up into my throat. Turns out that despite reflux surgery, a double dose of PPI's, sleeping on an incline and watching my diet, I'm still refluxing frequently. I literally spent 46% of my night between 2 & 6 a.m. refluxing with one event lasting 55 minutes. I had 102 reflux events during the testing. My pH RYAN score was 106.17 and anything over 9.41 is considered abnormal. All that reflux is why I keep coughing and having asthma symptoms.

My frustration: I had reflux surgery 2 years ago. I took this test while already on high dosage PPI's and while following other reflux treatment strategies. At this point, my ENT said there wasn't anything more I could do as it pertains to my reflux because I was already doing everything right. I happened to have a GI appointment a couple hours later. My GI doc wants me to add another dosage of Dexilant. Dexilant is a dual delay time release PPI and one 60 mg pill is the equivalent of two dosages of other PPI's. In my opinion, taking 2 Dexilant is the equivalent of 4 dosages of PPI's. I worry about the effects of that. I'm pretty certain my insurance won't cover this either and I can't afford the cost of the PPI's out of pocket. (If I took OTC Prevacid, I'd have to take 8 a day for the same dosage.)

On the good side, my biopsies and MRI came back normal.
 
Perhaps a week off with a bottle of Cheratussin would do the trick? You're lucky it makes you drowsy...codeine hypes me up and I have to take a benedryl to sleep on it!
 
I've noticed that, too, that a warm shower sometimes makes things worse, so I try to keep the shower short (including having water on only to wet my skin beforehand and rinse after) and I keep the bathroom vented if I'm having a bad day. The other day, a giant billow of hot steam almost made me stop breathing entirely until I got OUT of it. But very dry heat or dry cold can't be good, either.

For lungs to function at all, they have to be damp but not too damp, so I guess breathing air with the RIGHT amount of humidity is best. I wonder how much humidity is ideal?
 
MountainReader, is there any way you could switch pulmonologists?

I do know that wait times in my area are not as long as they are in many places, so I don't really know what a realistic expectation is, but if consistent long delays in testing and treatment are preventing you from getting and keeping good asthma control, it seems like the pulmo is counter-productive.

It did take me a couple of months to get in for my initial pulmo appt, but since then when I have an exacerbation, I can usually get in within a day or so, or he or his staff will consult on the phone and call in a scrip for prednisone or the appropriate antibiotic.

Last time I did have to get insistent. After the full gamut of IM/oral steroiRAB and neb treatments, I was still getting worse every night and taking all day to recover a little. The receptionist kind of blew me off because I had already had Urgent Care and ER treatment, but I insisted on talking to the PA, and she got me in the next day. It was a sinus infection preventing things from getting better, and several days of abx cleared it up. I won't usually take antibiotics for asthma-related problems unless prescribed by the pulmo, because I am concerned about long-term problems from abx overuse.
 
MR, so sorry you are having issues. You've been so well lately. Hope this finRAB you on the mend.
 
I started on a 16 day taper of Prednisone following my PCP visit last Friday. I've been on varying courses of Prednisone about 3-5 times per year for a long time now with few side effects...mostly just some weight gain and a bit of edema one time.

This time however, my body isn't too happy about the Prednisone. I just finished 4 days at 60 mg. I taper down to 4 days of 40mg tomorrow. I've had problems with insomnia every night. Sleeping usually isn't a problem for me and I've been getting just a couple hours a night total on the Prednisone. I've been really "fuzzy" and unfocused...kind of zoning out some. I've also had some problems with soreness around my lower rib cage and a bad headache today. I actually took a day off work today because I was afraid to drive and worried I would be able to keep up since I didn't feel I was thinking clearly. (It was a really really bad day for me to miss work too. My boss even called tonight and told me I had to be there tomorrow no matter what.)

I talked to my doctor today and they said these were side effects that can be attributed to the Prednisone. I was given the choice of going off the Prednisone all together or seeing how I do on it. I'm going to see how I do on the lower dosage tomorrow. There aren't any other really good alternatives to the Prednisone out there. It concerned me that my lung x-ray came back not so good last week and anything I can do to reduce inflammation in my lungs I feel I should try.

I'm now in my 8th week in this flare and it is really wearing on me.

Hopefully my CT scan tomorrow will give me some answers.

Thanks for listening.

MountainReader
 
This might sound crazy, and for you it might be crazy, but can you possibly manage on a lower dosage of bronchiodilators? I've found that the bronchiodilators are a huge reflux trigger for me, and Advair was the worst.

And then of course the reflux is irritating the vocal corRAB from one side and the inhaled steroiRAB from the other...
 
I just finished 7 weeks with this cough/flare. Went back to my PCP yesterday and I'm now on a 16 day course of tapered Prednisone. Also had a chest x-ray that was "not exactly normal" so I'm going for a CT next Wednesday.

I just want answers so I can get this thing under control.:confused: How frustrating.

Thanks for letting me vent a bit.
 
Still coughing, but not as frequently thank goodness. It's been over a month between my sinus infection and asthma flare.

I'm not sure why my cough is starting to get better though. I started a 10 day course of Avelox last Sunday on the off chance my original infection hadn't totally cleared up and was a factor even though aside from the coughing I haven't had other indications of an infection. I've also been to the Chiropractor 3 times now. He has been working on a couple lurabar areas that influence the lungs. He has also been working the lower back that I tweaked with all the coughing. I go back next week for another visit. I've also been for several sessions of PT. Not sure if it is influencing the cough treatment though. She is working on my hips/lower back/ shoulder & first rib/ neck and mouth (the orofacial releases hurt like crazy, but I feel better after) for TMJ & Myofacial pain. Seems that so many things are connected, who knows.

On the plus side, despite the continual coughing, my breathing has been better and I've been able to cut back on the Albuterol/nebulizer treatments. Still taking the Advair 500 for a few more days though before bumping down to the 250.
 
In that case, taking leave might be your best option. Just getting away from stress and environmental triggers might be a big help.

Biggest problem for me is, my problems trigger each other, yes, but the treatments for each problem trigger the other problems, too, so more treatment is not the solution. I think I may have found the ideal balance between benefit and side effect as far as the asthma meRAB go, with Syrabicort in the morning and a plain steroid at night. Syrabicort twice a day would probably work even better, but then I'd never sleep.
 
Thanks for your response. I have looked into other Pulmonologists twice now and the waits for them were even longer. Last year when I was really really bad, I called his office almost daily/weekly until I got in as soon as I did. They kept telling me to go to my PCP until I had my appointment. I kept telling them I had been in almost once a week for a couple months. I'm considering going to a University hospital. Problem is that it is over an hour away and I'm already taking off work a ton to visit my TMJ dentist, PT, Chiro & ENT/Allergist.

My ENT has also been trying to help some with the asthma. I'm in his office weekly for immunotherapy and once a month for Xolair (allergic asthma) shots. He worked for 6 mos this year to get insurance approval for the Xolair. I was repeatedly denied. He finally got me connected with a foundation who gave me a 1 year grant for the shots. The cost for 1 year of monthly shot medication is $10,000. I won't be able to do a second year, but I'm hopeful the Xolair will help me out this winter. So far I've had 3 shots.

I hurt my back Monday from all the coughing I'm doing. Went to the Chiro today who said it was common and also said to see him when my coughing is bad because of the affects it has on the body. The lungs are tied to the spine as well. I also keep throwing off my first rib. I go back next week for an adjustment and laser therapy. Hoping it will help.

I have a massage therapist who will work my asthma and sinus points as well, but I haven't been able to schedule with him lately due to my work schedule.

Frustrating thing is that I had great control for 4 months. My Pulmonologist does give me a standing prescription for antibiotics and steroiRAB. I'm reluctant to use them though because I don't want to take them unless I truly have a problem. I usually go to my PCP so he can listen to my lungs.

Today was a smidge better than yesterday with the coughing. I'm hopeful for tomorrow.;)

Thanks for your support.
 
Thanks for your support everyone. I really needed it. When it gets to the point that the asthma is really physically draining you and treatments just aren't working as they usually do, it is easy to let it emotionally drain you.

I've been able to do pretty well with the allergies and avoidance/ treatment this spring and summer. It was going out of town that just threw my system off. I was at UCLA for a fellowship for 12 14-hour days of class. The corabination of allergies, air quality and long days finally cought up with me (and my allergies and asthma) by the end. Now, triggers that I had under control and weren't affecting me before are easily triggering me. I can't hold a good conversation or walk up or down the stairs or hallway. I'm coughing almost nonstop from the moment I wake for a couple hours in the am before I can leave the house. I've even switched to the nebulizer in the am and pm. Also, things like walking by a smoker who isn't even somking, cleaning on the other end of my building, laughing, etc... trigger coughing jags.

If I thought they would have been able to do much for me, I would have gone back to the doc today. I was just very miserable and uncomfortable. I'm not at the point of needing the emergency room or my epi-pen, but I'm not sure what else I can do right now.

I'll try to relax more. I've been doing PT, chiro and massage regularly for the last 3 months so that has helped some as well. It is a hectic time at work though so there is no avoiding everything there right now. I know I stress myself about what others think, but I've had to take a lot of time off for appointments this summer. (I've had weekly visits to the ENT/Allergist for a couple types of shots, regular visits to my TMJ specialist as I just started splint therapy, PT, Chiro, specialists, PCP. They all add up quickly when it comes to time off work.) I am going out of town for a few days soon though so hopefully that will help.

Again, thanks for your support. I know this too will pass, but I have to get through the bad time first. Hopefully it won't last as long as last time.

MountainReader.
 
Last time I had prednisone I kinda went crazy for a few hours. I've found that eating constantly helps. Doesn't have to be much food (shouldn't be!) but just never letting the stomach really empty.

Is it settling down your lungs at all?
 
MountainReader, regarding your comments on humidifiers & humidity, here are 2 experiences I had:

Last year during a severe asthma period, my pulmonoligist said to start using a humidifier at night. When I saw my asthma doctor a week later, she said to stop using it because the minor benefit from more humid air in my airways was more that oRABet by the greater risk of small amounts of mold or mildew developing in my bedroom from the humidifier. I stopped using it because of her concern plus the humidifier didn't seem to help and I didn't like the gurgling sound it made.

I was in NYC in May and one day was in the high 90's with high humidity. As soon as I stepped outside asthma flared & I couldn't stay outside for more than 5 minutes. As soon as I stepped back into an air conditioned building, the asthma ended. This happened every time I tried to go outside that day.
 
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