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Lori67
Rookie

USA
18 Posts

Posted - Jan 04 2011 :  10:17:34 PM  Show Profile  Reply with Quote
Hi everyone,

I've been reading some of the posts trying to take all of this in. I am 43 and diagnosed about 1 1/2 yrs ago. I'm a non-smoker so the diagnosis was quite shocking. I know that I still have times of denial. It just doesn't make sense to me. My pulm told me I'm stage 3, however, I think I'm stage 2 due to pft results. I keep reading and repeating to myself that this is not a death sentence. I am determined to do everything I can on my end to do what is best for myself. That being said, I am doing pulmonary rehab 2 x week. I take Ventolin, Dulera & Spiriva. I took Advair after my initial diagnosis and it caused thrush. I went through a vicious cycle of Advair, thrush, oral anti-fungal treatment, Advair, thrush... you get the pic. My pulm has been trying to find something that works like the Advair yet doesn't cause thrush. It seems that my problem is with the corticosteroids. Dulera has it but I take a small dose of one puff at night. My issue now is a hoarse voice. I really think it's from the Spiriva and drying out my throat. It wouldn't be such an issue if it weren't for the fact that I work in a call center and talk all day. I have water, Biotine, lozenges, gum at my desk and it never really seems to help. Does anyone have any suggestions for the hoarsness or a medication that doesn't typically have this side effect?

Here's an observation... Whenever I am calling somewhere on the phone for personal reasons, I notice that people are not so nice to me with a hoarse voice. It is the weirdest thing. I don't think I'm paranoid but can tell when someone is not being patient.

Still working on the fact that people can't see lung disease and think I'm perfectly fine. I'm trying to be proactive and advocate for myself. I don't know anyone else who has this disease except for the people I have met at pulm rehab. It's nice to bounce things off of each other. I'm dealing with depression and understand it's common with this disease. I have thrown my share of pity parties.

Any suggestions on how to approach a spouse to help them understand this? My husband is away with work a lot and depends on me to take care of the household which includes caring for our 10 yr old daughter. It's so hard to explain to her what is going on. I just have to tell her that mom's losing her breath and needs to settle down. She has asked me if I could die from this and I tell her no. Could I? Yes. Will I? Who knows. It's a crap shoot as far as I'm concerned.

I received a nebulizer a few weeks ago with albuterol and should use it 4 xs day. I get so jittery and nervous and it lasts for hours. My pulm prescribed Xopenex and I am hoping to receive my first RX this week. From what I understand, the results of the Xopenex do not outweigh the cost. I have been told that due to the side effects of the albuterol I should likely benefit. Any input on this?

If you have taken the time to read this, thank you.

Lori

PennyPA
Contributing Member

USA
4709 Posts

Posted - Jan 05 2011 :  01:01:51 AM  Show Profile  Reply with Quote
Hi Lori: You've given us good information but I have a couple of questions....well, at least one. Have you been tested for the Alpha-1 gene? Emphysema is inheritable and since you've never smoked, it's very possible you have inherited it.

Why not ask your doctor if you can try Symbicort instead of the Advair or Dulera? Many people have switched from the Advair to that because of Advair's sides and they are happy that they do not have any of those sides with the Symbicort.

The albuterol will make you jittery and nervous plus it has often been the culprit for an increased heart rate. Evidently people do not have the same reaction to xopenex so that might just do the job for you.

Just tell your daughter that you have trouble breathing sometimes and tell her, no, you aren't going to die from it but you do have to slow down once in awhile. She's mostly worried about you leaving her so let her know you'll be around long enough to see her get married and enjoy your grandchildren.

As far as your hoarsness, that is often a side effect from dulera:

•Inflammation or swelling of the nose or throat -- in up to 4.7 percent of people
•Inflammation of the sinuses -- up to 3.3 percent
•Headaches -- up to 4.5 percent
•Problems producing voice sounds, such as hoarseness -- up to 5.0 percent.

Try Symbicort and you might find you do quite well on it.

****************************************************************

You can’t change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 05 2011 :  04:09:09 AM  Show Profile  Reply with Quote
I started out with Advair and got thrush, so after my pneumonia I now use Serevent and Azmacort (now QVAR) instead. I also use the generic Spiriva (tiova) and occassionally still have hoarseness. It just comes out of nowhere. I don't like it, but I care about my lungs having the medicine more.
Tell your husband to read the post that I pulled up called, Sick Lungs Don't Show. Tell him that your lungs are sick and that you can't do all you did before, but you will try to. Tell him he needs to step up and help some more.
Ask your doc for a low dose antidepressant if it is really bothering you. Don't suffer anymore than you have to. An exercise program will help with the depression also. Those darn little endorphins just explode with happiness in our brain when we move!!!

Casey formerly majseventh
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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 05 2011 :  04:10:10 AM  Show Profile  Reply with Quote
Penny has a good idea with the Symbicort. I know she uses it. I have never tried it.

Casey formerly majseventh
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Davy9
Rookie

USA
18 Posts

Posted - Jan 05 2011 :  07:44:06 AM  Show Profile  Reply with Quote
I would echo Penny's advice that you be tested for what is called alpha -1 anti trypsin deficiency syndrome. It is an inherited genetic defect that can lead to a serious and pure form of emphysema (a type of COPD). Alpha -1 is rare but should be assessed.

As for your medications you are taking the best approach by working with your doctors to tailor them to your needs and how they impact you personally.
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Lori67
Rookie

USA
18 Posts

Posted - Jan 05 2011 :  08:01:01 AM  Show Profile  Reply with Quote
Thanks so much for the input! I have been tested for the Alpha1 and it was negative. Not surprising since there is no history of emphysema in my family. My dr thinks that it is likely that my COPD is caused by 2nd hand smoke while a child. My dad smoked till I was about 12-13. My siblings are non smokers and don't have any of the symptoms of COPD. I don't talk to my dad about it. I don't want for him to feel bad, because I know he does. My mom tells me. What's done is done. There was not nearly the education in the 60's & 70's about secondhand smoke as there is today.

I will ask my dr about Symbicort. If I didn't have to talk so much for work it wouldn't be so bad. I don't see him again till March but will think about if I need to contact him sooner.

Casey, I already take antidepressants and have for several years. Side effect of having my thyroid removed in '96. I think you're definitely right about the exercise. After pulm rehab I go to work and can usually tell that I feel more energized. I have a treadmill in the garage that I've asked my husband to bring in the house. Still waiting... He asked me about a week ago to take a walk with him. It was like 30 degrees outside. I explained to him that this is not an ideal situation for me and I would REALLY like that treadmill moved inside. Still nothing. LOL All I can do is laugh or I will go crazy!

I'll take a look at the post Casey. Thanks for pulling it up.

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Scout
Contributing Member

USA
1011 Posts

Posted - Jan 05 2011 :  3:01:50 PM  Show Profile  Reply with Quote
Hey Lori.....I'm on symbicort and spriva and do great (well...as good as can be expected!) with that combo...BUT...I use albuterol as my rescue inhaler.....I very seldom have to use it but when I do..........hoarseness!!! Everytime! Sound like a 80 year old smoker woman!! The spriva probably isn't the culprit...don't know about the symbicort but it doesn't affect me....something's going on with my eyes(?)....think that may have something to do with the symbicort.....but will overlook it! soooooooooo......there ya go....just thought I would share that!

Connie-AR
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Lori67
Rookie

USA
18 Posts

Posted - Jan 05 2011 :  5:09:01 PM  Show Profile  Reply with Quote
Thanks for sharing Scout! :) I know that Spiriva can cause dry mouth so I'm wondering if it's mostly drying out my throat. I honestly don't know if the Spiriva is working. I guess I have been feeling better since my flare up started in August. I get most of my relief when I take the albuterol. One of the techs at pulm rehab keeps saying that maybe I have asthma because I respond so well to it. When I asked my dr he said no, you have COPD, there is an asthma component to COPD. He says that with asthma you get immediate relief and the asthma attack goes away. In my case, I use the albuterol and 4-5 hrs later I'm tightening up again. I am hopeful that we will get the meds to a place where I can breathe well and not sound like an 80 yr old smoker woman! (thanks for that Scout)

I checked my mail in pharmacy order online today and the Xopenex has shipped! Hallelujah! There are things in life that I never thought I'd be so excited about... Getting 4 new tires on my car, getting a new washer and dryer that don't squeak or eat my clothes and now added to the list, getting new breathing meds in the mail. It's the little things, right?

That being said, has anyone used Xopenex?
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Scout
Contributing Member

USA
1011 Posts

Posted - Jan 05 2011 :  5:26:31 PM  Show Profile  Reply with Quote
I don't but I've read where some on this forum use. I know nothing about it...I don't think. Some of the medicines are generics or different names in other countries ...but I bet someone will respond.

Glad you're here Lori67....you will get a world of information here!

Connie-AR

Edited by - Scout on Jan 05 2011 5:29:43 PM
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Lori67
Rookie

USA
18 Posts

Posted - Jan 05 2011 :  5:38:11 PM  Show Profile  Reply with Quote
I already have Scout! It's like going through Lung Disease 101. I can barely read the 02 conversations because I have no clue what everything means. Baby steps for me!
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PennyPA
Contributing Member

USA
4709 Posts

Posted - Jan 05 2011 :  5:40:25 PM  Show Profile  Reply with Quote
Many of those on the boards use xopenex because it apparently doesn't have the sides that albuterol has. Since surgery, I don't use a rescue inhaler but if/when I have to use one again, I will go with the xopenex, IF ADC carries it.

****************************************************************

You can’t change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Nonnie3
Rookie

USA
9 Posts

Posted - Jan 05 2011 :  6:04:32 PM  Show Profile  Reply with Quote
Hey, I'm a newbie, too. Just got out of the hospital last Friday with COPD and pneumonia.

I'm having a lot of hoarseness and dry mouth and use Spiriva, too. Hmmmm? Maybe that is my problem.

This site is so amazing and I'm so glad I found it. I like my pulmonary doctor but find that doctors don't tell you a lot of things like PLB or dry mouth, etc. I learned about PLB from a pulmonary tech I met.

Thanks for any info I might learn.

Sandra

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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 05 2011 :  6:58:30 PM  Show Profile  Reply with Quote
Lori,
If you can clear the spot for the treadmill and then say, "I need the treadmill put here so I can use it today", maybe he will. If not, keep nagging and insist that it is essential for you to use everyday, not someday.
Also, Spiriva isn't a med that we feel working. It does, but it sometimes can take up to 1 year to work properly. It is proven to reduce exacerbations, so just keep using it.
What order are you taking your meds in?
I can't use the albuterol every 4 hours without the shakes either. I was told once that I could try (and I did) to use 1/2 vial and that would reduce the shakes.
I don't use it anymore since I have been on the long acting bronchodilators (LABA) and Spiriva. I will only use it when I am having an exacerbation. So, hopefully it is temporary that you are having to nebulize every four hours. If you start on the treadmill every day you will get better.

Casey formerly majseventh
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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 05 2011 :  7:01:00 PM  Show Profile  Reply with Quote
Sandra,
Make sure to rinse out your mouth and throat with water after using your inhalers.
It really does help.

Casey formerly majseventh
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Lori67
Rookie

USA
18 Posts

Posted - Jan 05 2011 :  7:39:16 PM  Show Profile  Reply with Quote
Casey,

I'm really good at nagging and I'm certain that the treadmill can be set up. Leverage, leverage. Gotta think of some kind of leverage. :) Really, I think my husband is in denial about my COPD. I don't know why he won't move the treadmill. I cannot fathom his thinking. I guess I just need to act like I'm going to move it while he's home and then he'll say he's got it. All part of the plan.

I have to remember about the Spiriva taking up to a year to work properly. I take the Albuterol, Spiriva and Dulera in that order in the evening. Then I brush my teeth and rinse with mouthwash. I use albuterol in the a.m., sometimes at work, after work and at bedtime.

I really hope that I can reduce the frequency of using the Albuterol. I know everyone with COPD knows this, but every time you use your inhaler it is a reminder of the disease. It can never be forgotten and you have to be alert at all times for triggers. One of my friends has lost weight and gave me some of her clothes that she can no longer wear. The fabric softener that she uses made my throat/chest hurt and had to get everything washed pronto. Stuff like that you just don't think about.
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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 05 2011 :  8:35:47 PM  Show Profile  Reply with Quote
I looked up Dulera and it suggests taking a corticosteroid with it. You said it has it?
It also is to be used with two puffs twice daily? You are only taking it at night.
Also, most of us use the Spiriva in the morning. And, don't use the albuterol within two hours and the Spiriva or LABAs (Dulera).
It will make it so the others don't work properly.
Albuterol is a short acting drug and the Dulera is 12 hours and the Spiriva is 24 hours.
Use the Dulera first and then the Spiriva second in the morning.
Also, rinse with water right after. Then if you want to brush your teeth and such.
You can also eat yogurt daily or any probiotic to help you not to get thrush.
Of course, you should check with your doc.
Hope this helps you.

Casey formerly majseventh
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Lori67
Rookie

USA
18 Posts

Posted - Jan 05 2011 :  9:12:32 PM  Show Profile  Reply with Quote
Hi Casey,

Dulera already has a corticosteroid in it. It's a combination product containing a corticosteroid and a LABA. The reason I am only taking one puff at night is because I am prone to thrush. My dr said it's a low dose of corticosteroid so hopefully I wouldn't be as likely to get thrush. He also told me to take the Spiriva and Dulera in the evening. I think it had something to do with breathing being more difficult in the evenings due to the circadian rhythm. The meds should help my breathing while sleeping. I have sleeping issues. I'm having a consultation in a few weeks for a sleep study. My dr has told me to use mouthwash to rinse and that water is not sufficient. I must say, I have had better results with rinsing with mouthwash. I eat yogurt every day out of habit. It never helped with the thrush. I was also taking probiotic capsules for a couple of months that had no effect on the thrush. I'm finding it very interesting how different drs prescribe drugs differently to fit the needs of each patient. I can't remember exactly why I'm supposed to take the Spiriva in the evening but will ask my dr at my next appt. If it's more beneficial to take in the morning then I want to do it. Thanks for your interest and input regarding my concerns. I really appreciate it :)
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CarolCA
Contributing Member

USA
3200 Posts

Posted - Jan 05 2011 :  11:58:41 PM  Show Profile  Reply with Quote
I didn't go back and read all the posts but I have never heard that Spiriva can take up to a year. It can take a few weeks but a year that makes no sense.
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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 06 2011 :  02:03:50 AM  Show Profile  Reply with Quote
Carol, I didn't learn that here, but I learned that it takes a few months up to a year to work fully. ??? I just am passing on info I learned. Most that have taken it for awhile feel the difference. I know you never have and I am sorry.

Lori, I read something wrong about the corticosteroid and you are right. Sorry about that.
I don't understand only taking a little bit of the Dulera one time a day though, when it is a 12 hour med. But, if it works for you then that is great. It just sounds like the albuterol isn't cutting it. Albuterol is a short acting drug that takes up the same receptors as the others, so if you are using it first, the others have no where to go.
Does your doc think you might have sleep apnea? I hope you figure that out.

Casey formerly majseventh
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CarolCA
Contributing Member

USA
3200 Posts

Posted - Jan 06 2011 :  4:29:13 PM  Show Profile  Reply with Quote
I can't imagine taking something for a year with no results. I would have given it up long before that as I would imagine most people would. The hoarseness can come from the Spiriva but more likely from a steroid. If I take a steriod inhaler I cannot speak above a whisper after only a couple days as it relaxes the vocal chords I was told by a doctor recently.
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Lori67
Rookie

USA
18 Posts

Posted - Jan 06 2011 :  11:23:43 PM  Show Profile  Reply with Quote
Just thought I'd mention that my Xopenex arrived today. I have taken my first dose and it seems to be working well. I felt a little jittery but after about 15 mins it subsided. Thought I'd also mention that the directions state to take the Xopenex to open up the airways then take any steroid medication as prescribed. This is what I've been doing in the evenings with the Albuterol. I'm just mentioning this because Casey said to not use the Albuterol within 2 hrs of using the Spiriva and Dulera. I took the Spiriva this a.m. and am going to see if this makes a difference.
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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 07 2011 :  02:41:42 AM  Show Profile  Reply with Quote
That is interesting. But, Dulera also contains a long acting bronchodilator along with the steroid, so you are duplicating the bronchodilator. It does specifically say steroid. Also, Spiriva is not a steroid.
So, when you use the Dulera you are doing both the bronchodilator and steroid at the same time.
The short acting and long acting bronchodilators use the same receptors in the airways. This is what I understand.
I am not a doctor, nor a professional. But, It wouldn't hurt to try to use the Dulera and then the Spiriva in the morning. If it doesn't work well enough for you, then wait about 1/2 or so and use the xopenex if you need more.
In the evening use the Dulera and if you need more, then use the xopenex 1/2 after, but not within two hours before.
Or, don't!! :)

Casey formerly majseventh
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Casey-CA
Senior Member

USA
782 Posts

Posted - Jan 07 2011 :  02:47:56 AM  Show Profile  Reply with Quote
http://www.emphysema.net/inhaler_sequence.htm

This is the chart that I refer to.

Casey formerly majseventh
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Lori67
Rookie

USA
18 Posts

Posted - Jan 09 2011 :  9:17:53 PM  Show Profile  Reply with Quote
Thanks for posting the chart, Casey. It's good to see it all there in black and white.
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