Daliresp Experience

I have been on Daliresp for one month. I have noticed significant improvement in my lungs. By that I mean the mucus is gone, wheezing is gone. My lungs seem to be getting clear and do not feel as heavy as they did before I started taking it. I have had my bouts of depression, I am never hungry, which is a problem because I am underweight as it is. Just wondering if anyone else has had success with this drug. I was hoping to get off oxygen at some point. Don't know if I can achieve that or not.

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I don't have a lot of information on this medication, since it is very new to the U.S. market and we haven't had a lot of posts about it, either, for the same reason.

Have you tried discussing this with your doctor? They may have some ideas on how to safely increase your appetite and on whether or not your ever getting off of Oxygen is a possibility.

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Yes, I have discussed it with my doctor and as a result, we are monitoring my weight closely. So far, the good is outweighing the bad. It isn't too bad to be able to eat all that food and still maintain a constant weight. Although, I am trying to gain. Not good to eat alot of carbs though because they take more 02 to process, I guess. Guess we will just have to wait and see. Wish the insurance would pay for this drug. Very expensive!!
Thanks,

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Does anyone knw if the insomnia problem goes away,and how long before you notice a difference in breathing

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Hi Frank:
I have been on the Dalirest now for almost 3 months. I still have insomnia - so I take a melatonin each night to help out with that. I take 2 or 3 "naps" during the day also. I started breathing better the first week. Still have alot of the anxiety however. I try to stay calm because when I get anxious, it affects my breathing.

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Thanx darlene,i tried daliresp but quit because of severe insomnia,i cannot function on two hrs sleep,other than that i had no other side effects.if i can find a way to sleep i might try again,tried sudafed that did nothing for the insomnia.also i had stem cell therapy for my emphysema in florida the beginning of june,i hve noticed a slight improvement.but dr sad three to several months for results.we will see

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Hi Frank:
You may want to try the Melatonin 5 mg. That is natural and quite good. There is also a new sleep aid out that has 3 natural ingredients in it that is also suppose to be good. I wanted to do the stem cell, but I don't think insurance will pay and I cannot afford the $30k which is what I was told it cost. Just hang in there, my Pulmonoligist says there are alot of new things coming in the next 5 years for us.
Take Care, Darlene

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Hello Darlene,the stem cell therapy in florida is 5000$,this doctor has found a way around the FDA ruling that using your OWN stem cells is a new drug.hahaha

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Frank:
Keep us posted on how that works for you. I would try anything at this point.

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If you want info on florida dr email me [email protected] [1] couldnt find ur reply on message board

[1] Editor's note - In order to protect privacy, we do not allow individuals to post their personal contact information on our discussion threads (except in some very rare cases).

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HELLO AGAIN DARLENE,HIS NAME IS DR FEINERMAN,SARASOTO FLORIDA.GOOGLE HIS NSME.YOU TUBE ALSO HAS SOME VIDEOS

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THANKS, PLEASE CONTINUE TO LET ME KNOW HOW YOU ARE DOING...MY DOC IS STILL "THINKING" ABOUT THIS CONCEPT.

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OH GOOGLE ATRA EMPHYSEMA.YOUR DR CAN PRESCRIBE THIS FOR YOU OFF LABEL.BY INHALATION.I KNW HES GUNNA TELL YOU HES NEVER HEARD OF IT.READ UP ON IT AND YOU DECIDE.IM ON IT NOW BUT AGAIN TOO EARLY

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I have taken Daliresp for 9 months (Daxas from Canada and then Daliresp when I could get it in the U.S.) It is the best medication I have ever used for COPD. It beats stem cell therapy by a mile. The side effects were difficult for me, but once they subsided (took about a month of feeling like I had the flu), they went away and I have had no problems since. A lot of people give up because of the side effects, but they do go away. I have lost some weight which I needed to do and it hasn't returned. I have heard that you can work your way up to a daily dose by taking it every 3 or 4 days to get used to it. I dove right in though and started with 1 500mg tablet a day. I highly recommend Daliresp.

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I have just started Daliresp and an coughing up a lot of
mucus and am short of breath, Has anyone had these problems if so how long do they take to clear up.
Thanks

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It took me about a month to get my system used to this drug. I had alot of the same issues you are having, plus anxiety and insomnia and I was even getting on my own nerves. Once the mucus is gone, you will begin to breathe alot better. I have reduced my 02 needs from 3 1/2 liters to 2 1/2. I am extremely excited about that. This is my fourth month. Oh, I have also reduced my need for alot of the other drugs I was taking. I am down to just Daliresp and AdVair now. This is a powerful drug and is the best thing I have had so far. We just need to hang in there. Good Luck.

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hello lynn,how did you handle the insomnia,thanx

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Hello Darlene,im happy to report that five months after stem cell therapy wit dr feinerman in sarasota florida ive seen a great improvement in my emphysema,oxi level goes to 99 now,i can further than i had been able to.the therapy consists of multiplying your own stem cells,plus atra inhalation therapy,well worth the 5000$.pulmonologist realy hve nothing to offer but pills and inhalers

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Hi Frank:
I am thrilled for you. Are you on any oxygen at all now? I am still taking Daliresp. I have not been sick since started taking it, but still on oxygen some. Guess it doesn't help that. My doc still can't do the stem cell because of the FDA. Don't know how I would ever get to Florida. Keep me posted, I am very happy for you!

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I didn't have insomnia Frank. I think it was Darlene that said she did. My son and his family just had a month of them all feeling sick and having colds and respiratory problems. I had been around them before they showed symptoms and the grand kids had been at my house. I used to catch everything. I am happy to report, I had no problems staying healthy throughout this time period and I believe Daliresp is the reason why.

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Hi Lynn:
I think Daliresp is very good also. I have not been in the hospital or sick for that matter since April. Last year I was hospitalized 7 times. I does make me very anxious. I even get on my own nerves. LOL...It is worth all the side issues. Just wish it would improve my lung function. I have heard that it does, but that it takes some time. I am interested in the stem cell, but want to wait until it is done by US docs. I am afraid to go to Mexico or somewhere like that. I have a home in Mexico and believe me, our docs are light years ahead of them. I was in a hospital in Ajijic, MX for one day and they really don't do much for you. Sweet people, but not very skilled.

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Re: JC (# 118)

AARP's United healthcare supplement pays for daliresp

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Gas, horrible gas. It does help a lot with my breathing, but I can't take the pain of the gas. It feels like labor pains. I was hoping that side effect would go away, but I gave it 2 weeks and just couldn't stand it any longer. I stopped it for 3 days, and I felt much better. Just to test it, I took a pill yesterday evening. This morning, I'm in pain again. It would be ok if I could get rid of the gas, but even GasX doesn't help. I can't get it out of me. I'd be willing to expell it anywhere and everywhere, but it's stuck inside and my intestines are very sore. That's the only symptom I've had.

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Lynn (# 71)

I just got my first order of daliresp from canada. Planet Drugs Direct 3 months for $260.00. Have been ordering other medicines from them for years and have been very satisfied. The only negative is it takes a while to get it. I have taken it for 4 days and have been coughing up a lot of mucus. Sure hope it helps.

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Re: frank (# 3)

If it is going to work for you, you will know right away. I knew within a week. There is no in between. It does or it doesn't. I understand it works well only in about 10% of the people. Thank goodness it did for me. Now to pay for it. My insurance paid but Medicare is balking.

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I have been taking this drug for about 6 months. I have had very good results. I have had no flare ups at all during this time. I do use oxygen at night and an inhaler in the day, but I have improved noticeably. Now I am having trouble getting Medicare to pay for it. We just went on Medicare and our group insurance was much easier. I'm thinking of tahing a trip to Mexico (I live in Texas) to purchase it. Any thoughts? I have lost weight but I have made an effort to lose.

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Can I just stop taking daliresp or do I have to wean off it? I have been taking it for several years and my doctor said I should stop taking it.

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Re: Lynn (# 13)

I have been on Deliresp for 2 yrs. In the beginning I had bad side effects. temmer and sleeplessness. I told my dr. and he prescibed two medications to conteract the bad effects. I call deliresp my miracle pill. I would hate to have to go back to how I felt before.

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Re: Ronny (# 109)

Using Pepto Bismol for symptoms is great and relieves nausea.

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Re: Judy (# 107)

Well, I told you in May I was trying it again, but just too many side effects while trying to get well from the other problems I stopped after a week. But, hope springs eternal and I will try it again when my only problem is COPD.

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Re: Lynn (# 13)

Thank you for saying to stick to it, I am having insomnia, runny nose and back ache but worth it as you say

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