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Post by maryaz on Jan 16, 2011 23:57:06 GMT -5
Has anyone in Canada tried this yet. I saw where it was approved for Canada and expected in the pharmacies in January. I would like to see what they have to say. Suppose a little early unless it has an immediate affect.
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Post by Blossom/Jackie W. on Jan 18, 2011 20:11:20 GMT -5
Mary I think it's still too early in the game yet for patient feedback though there's a couple of folks on it I think that I know of. And; I'd also like to hear what a Dr's feedback might be on it BUT; again it's still kinda early and they're apt to be cautious. However; I do have to add that on a TV news portion a week or 2 ago, there was a specialist who brought it up and his field (Resp specialists) was looking forward to having something to offer patients in certain situations when standard therapy wasn't enough.
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Post by Deleted on Jan 21, 2011 19:29:34 GMT -5
From what I gather Daxas is the first in a series of PDE4 inhibitors that should HOPEFULLY follow, I live in the UK and we have Daxas here but after a recent visit to my pulminory doctor she advised against it and instead gave me titropium (spiriva) ..The docs over here like the tried and tested meds best
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Post by Blossom/Jackie W. on Jan 22, 2011 7:52:37 GMT -5
Hey Bluecloud. Nice to see you. Daxas isn't a "replacement" for drugs such as Spiriva, but an add on "to" It's intended for people who have chronic bronchitis as part of their disease, with frequent exacerbations becasue of the inflamation. Most of these same people who would be using it are already taking Spiriva. Any idea how it's working for those people using it? (Daxas)
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Post by Deleted on Jan 23, 2011 9:19:57 GMT -5
I have no idea how people are finding Daxas , we seem to hear surprisingly little about it
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Post by ronwtor on Jan 25, 2011 18:11:15 GMT -5
i have been using daxas it is 500mg tablet.ihave chronic bron. the cost is 90.OO DOLLARS FOR 90 TABLETS
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Post by susanny on Jan 25, 2011 23:30:14 GMT -5
Ron, you are the first here to say you're using Daxas. I'm sure everyone is as interested as I am in how it is working for you. How long have you been taking it now, and have you noticed any difference in how you are feeling? Have you had any side effect symptoms yet? And I'd like to know how often you had exacerbations prior to beginning Daxas, and how often you'd been hospitalized for them. Any other information would be super, such as what your FEV1 was before starting it also.
Thanks for sharing what you're willing to with us. It could be of so much benefit to some of us. Sue
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Post by Blossom/Jackie W. on Jan 26, 2011 11:51:53 GMT -5
Tell us more Ron when you can cause I know you keep having back to back infections and sometimes hospitalizations.
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Post by zar on Jan 27, 2011 5:35:21 GMT -5
Roflumilast is an orally administered, selective phosphodiesterase 4 inhibitor that is a novel treatment for patients with severe chronic obstructive pulmonary disease (COPD). Across four randomized, double-blind, multinational trials in patients with moderate to severe or severe COPD, roflumilast 500 microg/day produced significantly greater improvements from baseline than placebo in pre- and post-bronchodilator forced expiratory volume in 1 second (FEV(1)). While mean increases in FEV(1) in roflumilast groups were small, they were in marked contrast to the decreases or negligible increase in FEV(1) in the placebo groups. In three of four trials, roflumilast significantly reduced the COPD exacerbation rate; in a pooled analysis of two 52-week trials, roflumilast was associated with a 17% reduction over placebo. Further randomized, double-blind, multinational trials compared roflumilast 500 microg plus salmeterol with placebo plus salmeterol and roflumilast 500 microg plus tiotropium bromide with placebo plus tiotropium bromide. In both trials, roflumilast plus long-acting bronchodilator produced significantly greater increases in pre- and post-bronchodilator FEV(1) than placebo plus long-acting bronchodilator. Roflumilast had an acceptable tolerability profile. In a pooled analysis of two trials, 19% and 22% of roflumilast and placebo recipients had serious adverse events; in the corresponding groups, 14% and 11% discontinued medications because of adverse events. www.ncbi.nlm.nih.gov/pubmed/20687624 |
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Post by shelley on Jan 27, 2011 10:16:30 GMT -5
I'm really interested Ron in how you are faring with the side effects. I know of two other people that have had to stop and cut their dose in half as the initial side effects were intolerable for them. I am at TGH on Feb. 15 and was going to ask about it for myself but I already have gastro probs so I'm concerned. Also, at this phase of the game, you and I are in a position where we really want to try anything that comes on the market as we have little to lose but perhaps a whole lot to gain. You're with West Park aren't you? I was in on the original test group perhaps 7 years ago but they wanted me to stop my atrovent or advair; can't remember which; and i was too scared so I didn't stay with the program.
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Post by ronwtor on Jan 27, 2011 19:20:56 GMT -5
i did 6 month clinical study. i told the study doctor i love to be on i t ihave been on daxes for two weeks i have gone through 2 big boxes of kleenex coughing up phelm.i have also took 6 month traing course on copd at the canadian lung ass to learn more on my dease. my lung infections are caused bye low immune system and severe copd,
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Post by zar on Jan 28, 2011 6:50:32 GMT -5
Over the past few years when this drug has been discussed. Some people that were in the trial/s have said that they saw some improvment,but only one as every said what the improvement was..He said he did have some side affects for the fist few weeks.
But what was interesting was that his FEV1 went form 39% to 56%,and after the trial, his FEV1 was 42% and has stayed there for the last 6 years.Which I most of us would die for (joking).The trial he was in was for Emphysema
I have no reason to disbelive what he has stated,and as some of you know I have just turned down the chance(for now)to enter into a much more invasive procedure ( open surgery),were it was hoped the FEV1 improverment would be 12%.
There are 11 families of phosphodiesterase inhibitors and by using 1 or 2 of them with a PDE 4 ,or FANA ONOs (another trial)they my beable to reduce the side affects.
Untill then I would like to hear from more people who were in the trials for Daxas,what if any were their improvements at "that time".
Quote,
" While mean increases in FEV(1) in roflumilast groups were small, they were in marked contrast to the decreases or negligible increase in FEV(1) in the placebo groups".
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Post by shelley on Jan 28, 2011 9:13:57 GMT -5
I can only imagine the wonders of even having an FEV1 of 30% again; it was so long ago. However, i wonder what the effects, if any, of this drug are on DCLO. What a dream! Something that would improve our gas exchange. Speaking of low DCLO, does anyone have a line on docs doing TTO here in Ontario? I'm now running a 6lpm of O2 for ambulation and my nose and ear are getting raw (yes, I have softhose); so I'm ready to give TTO a try.
Ron, stick it out if you can because you're on the leading edge here and it sounds like it's really working for you. Curious about the program at the Lung Association...didn't know they had one; but, did they say 'lung attacks' were caused by the same thing for everyone or did they say some people flare due to auto-inflammatory conditions or possibly residual low grade infection. Wondering just how much info is getting out there and how widely accepted it is.
Zar, read your post on that surgical trial and think you made the right decision. Sounds incredibly invasive and downright dangerous. With trials I think we all have to know when to step up to the plate and when to say 'no thanks' as you did. IMHO you made the right choice.
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Post by Blossom/Jackie W. on Jan 28, 2011 9:17:36 GMT -5
Not to get off topic here again but Shelley.... I don't think they're doing TTO's in Canada yet. At least they weren't unless you have a renegade specialist.
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Post by ronwtor on Jan 28, 2011 11:36:18 GMT -5
i have been on daxas for 2 weeks
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Post by susanny on Jan 29, 2011 0:55:06 GMT -5
I know it is too soon to know how it is affecting your lung function, but will be interested to know how your next PFT comes out. Do you have a date set for that yet?
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Post by ronwtor on Jan 29, 2011 21:36:24 GMT -5
sue. two weeks to see resp. icheck peak flow meter and see a differance. i have no wheezing or gurgling in chest
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Post by super grandma on Jan 30, 2011 2:52:10 GMT -5
I started taking the daxas but I had a bad headache for four days so I stopped taking it but will try it again in about a week and see if I can take it the second time around. Did not have any other side effects in fact I wasn't sure that it was the daxas that gave me the headache but it went away after one day of not taking it.
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Post by Blossom/Jackie W. on Jan 31, 2011 7:43:52 GMT -5
Please let us know how you make out Super Grandma on your next go round....
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Post by ElizabethFL on Jan 31, 2011 10:04:09 GMT -5
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Post by shelley on Feb 22, 2011 19:56:41 GMT -5
Here we go.....started Daxas today. We'll see how it goes. BTW, I do not have any phlegm unless ill; so we'll see if it does anything for me. Will keep all posted.
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Post by Blossom/Jackie W. on Feb 22, 2011 20:04:13 GMT -5
Well; I have phelgm; got worse after my surgery. I also get frequent flare ups.... seems to be every 3 months for the past 18 months at least.
Shelley; it's gonna take awhile to find out BUT..... I sure am interested in the results!
Why'd they put you on Daxas if you don't mind my asking?
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Post by shelley on Feb 23, 2011 10:10:23 GMT -5
Guess I'm a little odd in that the only time I ever have phlegm is when I get ill. It's one of the reasons why they've continually searched for a reason why things have gone down so quickly for me. On the other hand, I was diagnosed quite young and it's now over 20 years ago; so don't think we can hang on forever  There are some though that once they stop any bad habits and start taking care of themselves stay fairly stable with very little change. I was always stable for long periods and then take a large dip for no reason and that has always been my routine. Met with my respirologist yesterday and I think at this stage of the game it's sort of try anything that comes down the pipes because it can't hurt. Also, although I don't have frequent flare ups my FEV1 & diffusion are eroding somewhat quickly and my O2 needs increasing (up to 6lpm for exercise & 5 for just walking around). It is thought that Daxas has an anti-inflammatory process so maybe it will slow down the progression. Who knows but it's worth a try! FYI, she was on her way to a meeting about a couple of inhalers coming down the tubes. It would seem, as she put it, that the pharma's are finally looking at meds specifically for COPD rather than just asthma. Think that's good news for all of us. |
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Post by hugahusky on Feb 23, 2011 15:54:18 GMT -5
My GP told me about Daxas in November and told me he would give me a script for it when it became available.Twice in January I mentioned it to him again and the first time he told me it was not available yet and that my drug plan probably would not cover it. I told him that the pharmacy downstairs from his office had it and that yes, Sunlife would cover it. He said he wanted to do some more research on it.
The next conversation we had he told me that he did not like the side effects and that perhaps when I went to the respirologist he would prescribe it. I am still waiting to find out when my appointment will be.
I was extremely disappointed as I have a lot of phlegm in the mornings to the point that it scares me sometimes because I can't breathe or seem to move it. (I live alone.) I have chronic bronchitis and emphysema and my FEV1 is 35%. I guess my GP just wants to keep giving me antibiotics on a regular basis.
Will keep you posted if I can change his mind or finally get to see the respirologist.
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Post by ronwtor on Feb 24, 2011 12:48:58 GMT -5
hi members. daxas is the best med i ever took. no wheezing or anything according to my resp. it has boosted f.v.i a little higher. i have gone thr. 4 big boxes for the amount of phelm i cough up. i got 2months supply again cost 159.00 dollars my ins. cost me 36.00 dollars. the first few weeks on it you do get some side effects they clear up after using it for awhile .only one dont is sleepness. this is the best i ever felt in a while
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Post by shelley on Feb 24, 2011 12:59:24 GMT -5
Well day 3 and not significant change but I really didn't expect anything yet. I have a PFT at the end of March so that will tell some sort of story. On the bright side, I've had no side effects.  |
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Post by valerie on Feb 24, 2011 14:34:09 GMT -5
I'm like you in many ways Shelley, I don't have phlegm unless I have a cold or infection, but hardly any then to. But if Daxas increases the FEV1 only a little, I'd be very grateful as it's getting dangerously low. Will be waiting with interest tyour opinion about it after a few weeks use.
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Post by valerie on Feb 25, 2011 6:06:41 GMT -5
This is for Hugahusky, Ronwtor and Shelley again. I read some place that Daxas was to be taken instead of inhaled corticosteroides, like budesonida in Pulmicort or Symbicort, as it should have less bad side effects, for example, discalcification of bones. At this early stage of being given Daxas, has any doctor told you not to take inhaled corticosteroides, if taking them before.
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Post by shelley on Feb 25, 2011 19:32:01 GMT -5
Although my doctor has not told me to cut back on the corticosteroids, I have been doing it already over the last little while. There are too many studies that have proven that they have very little benefit to COPDers. However, I have been on them for over 20 years and my bone density is fine.
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Post by shelley on Feb 26, 2011 18:47:52 GMT -5
Day 6 and the nausea hit yesterday. Yes, I'm sure it's the Daxas. However, my gastro system acts up with every new med that I take. Trying to stick it out as I know it will stop. Gastro side effects were high on the side effects list but nevertheless, I was hoping to escape it. Oh well! I'll see if I can hang tuff and live off gravol for a few days.
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There are some though that once they stop any bad habits and start taking care of themselves stay fairly stable with very little change. I was always stable for long periods and then take a large dip for no reason and that has always been my routine. 
