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...
I too would be interested to hear any "good" reports from anyone that has taken it.
odd when i looked up the daliresp site it seemed to warn more against it that advocate for it;
http://www.daliresp-us.com/
Also, it got me looking back to my Pulm visit last year that she drew 5 vials of blood from me, but from what I can interpret it was for IgG type antibodies....long time since i took microbiology....
does IgA have anything to do with the antitrypsin (sp) deficiency?
I have always been the type of person who spent a lot of time in other Forums of that era (No FB Support Groups) but mainly here in DS which I always will consider ''Home''
Well, reading on the ''Largest'' now closed site, I first came across this discussion on this New Med....There was a lot of debate going on between the ''Long Timers'' and the concensus was firstly, it was only for those with COPD Bronchitis., The Cons outweighed the Pros, mainly because of the Horrible Side Effects and the fact that the Pharma. Manufacturers were very Cagey in their Promotional Literature. So personally, I decided not to try it.
There was a very recent ''Opinion Survey'' by a someone i had run across many times on my forum travels, who now is associated with the Lung Foundation (Not 100% Sure) in the US. ''They'' in a Round-About Way, were trying to get people who have used it to Share their Experience. My gut feeling was this was a bit unusual and that now takes me to the Post by Soft Flower...just recently.
The feedback was at least 95% negative, in fact not many bothered to respond at all....Here are two Links that swayed me, on this Med. seeing I never tried it, I can only base it on Opinion that I find Credible....whatever credible means...
https://www.youtube.com/watch?v=adN8VeJFe8A
http://www.health.com/health/article/0,,20481604,00.html
As Usual this is My Opinion Only
Peter
[* The Chronic Bronchitis part is probably the most confusing for COPD patients and those who write articles.
First, Chronic Bronchitis is defined as having unusual increases or extreme mucus two to three months every year for two years. Period! It is often a term used for increased mucus (from inflammation) in the upper brachia as opposed to originating mostly from a deeper inflammation of the lungs, but that is not specific to the definition. Daliresp is for treating increased inflammation within the whole respiratory system.
Second, another layer of confusion comes in with international sites, because in the USA the FDA approved Daliresp for reducing Exacerbations, while in Europe (UK, GER ) Daliresp is approved for Chronic Bronchitis. The USA FDA considers an unusual debilitating increase in mucus as one of many symptoms of an Exacerbation. In Europe Chronic Bronchitis is considered a separate pathology.]
Daliresp reduces inflammation and reduces frequent exacerbations WITHOUT increasing steroid use. It also has a longer lasting effect in reducing inflammation. Daliresp works by blocking an inflammation-causing enzyme called phosphodiesterase type 4 (called PDE4 for short). People who have COPD tend to have way too much of this enzyme in their bodies. Left unchecked, PDE4 can result in a blockage of the airways. It is the ONLY medication available to reduce PDE4. (And now Softflower has posted an article showing there is possibility another positive effect.)
Dalirsep is notorious for its list of side-effects and the fact a larger than normal proportion of people who try it will experience these effects, thus one can almost say these symptoms are *normal* taking Daliresp, but they usually go away in two weeks or so once one begins taking it steadily. For those who cannot tolerate Daliresp the side-effects disappear within a few days after one has stopped. The most common reason for quitting in the first couple of weeks is diarrhea and nausea always annoying, but controllable with diet changes and will go away if one is tolerant. If they dont or other side-effects make one more miserable one cannot tolerate the drug AND should notify their doctor and STOP!
At this time Daliresp in clinic trials has been discovered to produce positive effects in a very low percentage of people. Lower than most. It also benefits a narrower range mostly those who fall within moderate to very severe COPD and has limited effect for those outside that range.
When I first tried it I couldnt handle it at all. I was then advised to take only half (Not easy as they are dinky little pills to split. Smile) after two weeks I got so I could tolerate it and went to full-strength. Others have reported their doctor advised starting any trial at half dosage by taking one every other day, based on my experience that seems like sound advice. It dramatically reduced my exacerbations Ive been on it for a year now and I have not had a single exacerbation due to mucus or fluids.
Note that it is purely a supplement to your usual medication (it is not a bronchodilator); it takes a while before the maximum benefit kicks in you will not notice any immediate effect; the extreme side-effects are at the beginning of any trial thus if you do try it, you have to keep taking it for two weeks minimum (perhaps longer); One, to ensure whether it helps, and Two, to either build up a tolerance or discover you truly cant tolerate it. A couple of pills for a week prove nothing and do nothing.
But now the kicker It is basically considered a latter stage medication. If you cannot tolerate it, the only option left is to crank-up the use of corticosteroids - which is potentially worse. If it has been suggested you try it - I advise you try it. If you have not been having frequent exacerbations or coughing spells, nor in the latter stages or COPD then ask your doctor why he is prescribing it.
It seems to work well for me, I don't get sick nearly as often, have not been in the hospital for almost 3 years. It has a yay vote in my book.
My insurance pays for it.....which I am very grateful for!