COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join the group and find support.

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Daliresp is helping me

I wanted to report back to all of you about my experience with Daliresp. I started taking it about 2.5 mos ago, after having been hospitalized twice last fall for a bad lung infection. My pulmo was worried that I was having too many exacerbations.

When I went to see him during a follow-up appt after the hospital, he wanted to put me on Daliresp (Roflumalast). This is a new drug, just approved by the FDA last Spring. In Europe it's known as Daxas. He said that IF I can tolerate the side-effects, that it would probably really help me.

Don't forget, Daliresp is for people with moderate or severe COPD, who have the chronic bronchitis component. If you just have Emphysema, this drug is NOT for you. I happen to have both problems.

I experienced an immediate decrease in my appetite. I found that if I eat too much, I have a mild queasy feeling. So this has really helped me control portion sizes. This is something I've needed to do anyway, because I'm very overweight. So I've already lost over 12 lbs! I couldn't be happier with that! The drug does cause diarrhea, but since I also take other meds that are constipating, that's not so much of a problem.

The side-effect that my doctor was most concerned about - depression and thoughts of suicide - I haven't had. No sign of any serious depression at all. Thank goodness!

I saw my pulmo a few weeks ago, and he was so pleased with what he observed. He wants me to continue the Daliresp indefinitely, and to try and reduce my nebulizer use to zero. And this is happening! I used to use my neb 3-4 times a day on a regular basis. Now I only use it once a day, if at all. There have been a few days where I haven't needed my neb at all. To me, this is miraculous!

You take this drug in addition to your current copd drugs. I use Albuterol in my neb, have a Pro-Air HFA rescue inhaler, and I take Symbicort and Spiriva. But Daliresp is a tiny little pill, instead of an inhaler.

Here is an interesting article about how this drug got approved by the FDA:

http://www.health.com/health/article/0,,20481604,00.html

If you have chronic bronchitis, and would like to try Daliresp, talk to your doctor. And if this one doesn't work for you, I know there are other meds in the research pipeline, so don't give up hope! I hope this helps someone here in this group. Hugs!

Replies

ldozy1
ldozy1

That is so awesome Sue!!
Wouldn't it be lovely to reduce the neb to zero... man - you'll have to get more seed catalogs to fill-up that time nebs once took!
I am so very happy for you.
deleted_user
deleted_user

that is sooo good! i'm so happy that you posted this for us to see what it's doing for you!

it's always nice to have someone you know tell you about a med.

i'm very happy that you've gotten teh results you have! keep it up!
SoftFlower
SoftFlower

Sue thank you so much this positive up date on Daliresp.

Many of us have watched the studies on this medication for many years hoping it would bring positive results.

It took some time for the FDA to release it here in the US.

I am so happy this medication is helping you Sue which means it is helping others and will help too.

Its good to know that for those who cant tolerate this medication, that other medications are in studies now and coming closer to release by the FDA.

Thanks again for this good news Sue,

Easy breathing to you,

Love
Holly
grannie
grannie

That is good news Sue, I am so glad for you, best part you may get to be rid of the Nebulizer, that is great.
Peta44
Peta44

Sue I am so please for you and thank you so much for sharing this with us all here.

Its great that you are getting on so well with this drug and it is having more than just one benefit for you.

Well done, keep on breathing easy.

Peta x
SSP1
SSP1

Hey, Sue! That's great to hear! And a perfect time - you can plan the planting and be ready when the weather is!
LilEllie
LilEllie

Sue, makes for a more positive day to hear that someone has had success with new medication.

I have pure emphysema so doctor said it wouldn't help me, as you mentioned, but there is always tomorrow. :)

Have some better days now and I will certainly celebrate with you.
boldprint
boldprint

Ah, this is such good new. I'm happy the medication is working so well for you!

Susan
deleted_user
deleted_user

Thanks Sue !! I am going to look into taking this at my next Dr. Appt.
LilEllie
LilEllie

Hope no one minds the bump but this is some good news and there may be more that are interested in talking to their doctor about it.

Thanks
ldozy1
ldozy1

Not sure if this is the thought of all pulm Drs but much of what I have been reading via pulm web sites lately has a new trend of thought that if you have ever smoked, many pulms are adding a "chronic bronchitis diagnosis" ( even if we have never had it) to those with a "smokers" emphy diagnosis.
That reason was why my Dr trialed me on Dalirep.. the thought being that if there is the CB or possible inflammation component that maybe was causing the freq. exacerbation's then maybe the Dalirep might help. So for those who flare frequently.. you might still discuss trialing this med with your Pulm Dr. and see what they say.

For those not able to take the Daliresp, the Arcapta Neohaler( aka Onbrez or Indacaterol)is hopefully coming out soon. Not sure why the Jan launch date has been delayed here in the US but I'm anxiously waiting for its availability.
Regardless, again - YAHOOO Sue!!!!!!!!!!!!!!!!!!!!!!!!
Peta44
Peta44

I was diagnosed emphysema, I don't have chronic bronchitis, I have smoked previously.

Possibly those who continue smoking after being diagnosed with emphy may well have developed chronic bronchitis in addition to emphysema.

I believe the doc is the best person to advise on what medication is suitable for each individual, the doc being fully aware of patients medical needs, certainly always worth discussing new meds with the doc, especially as some are more suitable than others for certain individuals.

Its great that your doc guided you through the new drug Sue, its real good news to hear how much it is helping you.
LilEllie
LilEllie

I have always felt that after all the standard tests, up to and including the CT Scan, worked well for those of us with emphy but as the years pass , there are times when we get acute illness that cause more damage to the lungs such as pnuemonia, flu, chest colds, etc .

Could this be the time that our emphy swings to include symptoms of CB? I don't flare frequently.... today, ....but because this disease changes, , if or when it should, I would like to have a drug in mind to discuss with my doctor.

I read about Daxas when it was being invistigated in EU and some of the parameters have changed since then so IMO is we don't don't say no to anything until we personally feel that we have the answer that the doctor and I can agree on.
deleted_user
deleted_user

Thanks for the update Sue. That's good weight loss. Glad you are doing better.

tom
deleted_user
deleted_user

I am so happy for you that you have found a prescription that not only helps your breathing as well as you getting out more often. Nothing is better knowing that now you can at least get out and enjoy. I'm not saying everyday because of the fact that you said you were over-weight. It seems to me that this drug also helps with the appetite. Keep everyone posted so we know how your doing and if you had to increase/decrease the dosage. I cant' say it enough, I am so very happy with your results. Whooohooo......