Daliresp Experience (Top voted first)
UpdatedI 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.
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.
I never did. I stuck it out for a month at the full dose and then I was over the side effects as suddenly as they came on. I know others that have gone the 1/2 pill route for a month or two and were successful. One even used only 1/4 tablet, but they are so small I don't know how that's possible. Currently, I have cut down to only 1/2 pill (I was taking 500 mg) per day because I have had no respiratory problems except for one minor cold in the last few years. I attribute that to Daxas aka Daliresp. My doctor was fine with me reducing my dose. I believe it comes in a 250 mg size anyway. I spent a lot of time in the bathroom I can assure you when I started taking it. Have a box of Immodium handy and something to fight the nausea. For me it was all worth it though because I used to get bronchitis a lot.
I have been on Daliresp now for 2 years. Have not had bronchitis or pneumonia once since I started. Have lost a lot of weight. Do have panic attacks. I take low dose Xanax for that. You can get the drug much cheaper in Canada. You will need a prescription from your doctor. It is about 1/2 the cost of what it is here in the U.S.
You are correct! That is what our government did to us when they forced medicare D on us. It was suppose to help. But it stopped all drug companies from helping us, like you stated, we have med D, and many drugs are not included, and it just leaves us with being forced to go without many medicines that could help. If you cannot pay out of your own pocket, then that's the end of it. Sad but true.
I think we should all email this woman and explain our situations, she is with the White House. It won't hurt and possibly may help. What have we got to lose? I will keep trying to find us some help. We could also email, write, and call our State Senators, if we worry them enough maybe they will do something about this loop hole they created.
Department of Health and Human Services
Secretary Kathleen Sebelius
hhs.gov
I found her under the President's Cabinet members. Lets all give it a try, can't hurt!
What about 1/2 a pill every other day to build up your tolerance? I had side effects for one month and then they simply vanished. I have had no bronchitis or serious respiratory illnesses since I started taking Daliresp. I almost gave up too, but I'm sure glad I didn't.
I have been taking Daliresp for almost a year and have noticeable improvement in my ability to breath. I no long need oxygen all night and only when I'm over active during the day. I do try to take a day off it every several days to both see how I can handle daily activities and give my liver a little break. I have noticed little to no problems doing this. I too am very underweight and have no appetite, now I try to eat a little something every couple hours throughout the day instead of a couple big meals that I burn off breathing and never feel full or hungry either.
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
Frank:
Keep us posted on how that works for you. I would try anything at this point.
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.
It takes a lot of effort to get beyond the side effects. I do have empathy for you. Try every other day for awhile maybe. It took me a month, but the side effects disappeared as suddenly as they came on and I have not had a problem since. Also, keep telling yourself that you are feeling better. Your subconscious mind can do amazing things. Daliresp has been a godsend for me.
i have now been taking Daliresp for 8 months. Most of the side effects are gone but slight diarrhea still remains occasionally. My breathing is much better and I feel much better. Sleepiness has increased and I feel that my energy level has decreased. My appetite is good and I have now lost 20 pounds since starting the medication. I take my dose in the morning and thankfully my insurance does pay for it.
Kathy,
Check with Medicare, They sent me a form to fill out stating why I needed the drug and have the Dr. sign it and it was approved on an individual basis. As I understand it, there are a lot of drugs on the market that does not have a blanket approval and are approved on an individual as needed basis.
If you had exacerbations in the past, Daliresp may bring a halt to those. That's what I have found. I have taken it for over 2 years and have had nothing more than a cold. In the past I used to get bronchitis and have had pneumonia twice. No more! I take 1/2 tablet per day now. I used to take a full 500 mg tablet daily, but I found half as much seems to work just as well for me.
I have been on Daliresp for three years. Prior to that, I was in the hospital about every three months with either an exacerbation issue or pneumonia. I have not been in the hospital or been sick at all with lung issues since I started taking this pill. I have, however, lost quite a lot of weight and really did not have any to lose. I try and eat well and hope to gain some back. Hard to find clothes to fit. But, I am certainly happy with Daliresp. I take one every other day and it works fine.
Hi. Happy to hear that there is something that is helping you. Have you thought about taking magnesium? I had an axiety attack and the ER told me that I was
deficient in magnesium and potassium. I began using them both. The potassium
not so much. I heard that it can give you palpitations. But the glycinate form of
magnesium does not give you loose stools as other forms of it might. If I feel like
I drank that cup of coffee too late, I will take 2 tablets right before bed. Mine are 400mg each. I generally take about 1-2 with each meal depending on how much
salt I have taken in the meal. It is a great sodium regulator. Hope that this helps, but, of course, ask your doctor first if he or she feels magnesium might be a problem for you.
Hang in there if you can I started with 500 mg every other day too much aide effects but it help my breathing now I take a half every two days still have side effects but not as strong I will keep trying cause it works. I was on flovent as well but trying to cut back on that cause it makes me hoarse and. Coughing all the time hope this helps anybody
I HAVE BEEN ON DALIRESP FOR ALMOST 3 WKS. IT HAS DONE WONDERS FOR MY COPD. GOING TO HAVE TO GO OFF IT BECAUSE ITS COST
ADAVISVISCANT PAY FOR IT. DOES ANYONE KNOW IF MEDICARE PAYS?
Can you take half a dose of daliresp (250 mg)? The full 500mg dose is causing me to cough constantly. Also, how long does daliresp remain in your system?
I started looking at this chat room this morning and I'm so impressed that Lynn and Darlene are still posting since 2011. I've tried Daliresp twice and had to quit because of side effects. I'm in late stage COPD and suffering since Nov. with cold & flu-like symptoms. I had a Mastectomy 2 weeks ago and my Pulmonary doctor has upped my meds and put me back on Daliresp. Reading your messages is really helping me want to stay with it. As of three days ago my breathing got much worse and yesterday was my first dose of it. I really want to stay with it.
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