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Post by shelley on Apr 5, 2011 18:41:30 GMT -5
Heya helenaudrey; we're cool...wasn't even thinking of your posts. You made me laugh....sure you haven't grown another head? I thought your post was incredibly funny.  . Not to worry! Ron...no side effects...wow I envy you! When did any of the side effects stop for you and which hit you the hardest? I'm still toying with giving it a second go as I have 3 months of it in my med cabinet. You've had such encouraging results and what a great time of year to have your breathing ease up a bit. |
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Post by Deleted on Apr 8, 2011 22:28:34 GMT -5
Sorry about that Shelley  . Got myself worked up unnecessarily. I'm now in my 16th day, stomach settled down, but have slight dizziness, hopefully that will pass. Still coughing plus the usual mucus, although I do think this has improved slightly, cough has changed somewhat - not that deep deep cough. I don't expect too much at this stage, it's early days and, apparently, takes several week to take effect. I see my respirologist on Tuesday so will see what he has to say. He'll probably be annoyed with me coming off of theopoyline (sp) without his permission. C''est la vie. |
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Post by ronwtor on Apr 8, 2011 23:04:18 GMT -5
hi helenaudry. you are doing good hugs ron
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Post by Deleted on Apr 8, 2011 23:15:36 GMT -5
Thanks, Ron. Appreciate it.
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Post by shelley on Apr 11, 2011 8:42:13 GMT -5
Helen, I also experienced the dizziness with it; actually it was more like a very strange heaviness and at one point I thought it was going to take me down as everything felt very weird. I sat down and called my husband as I thought a controlled fall was better than the other option. Actually wondered whether I was having a stroke. It was very strange. Of course, it went away when I stopped the med. Took awhile though.
I did reconfirm with my respirologist and the transplant doc about my uniphyll dose which is 600 mg / day. Both told me not to cut my uniphyll and not to try and cut dose (I have 400 mg pills in the cabinet from when I tried to cut my dose months ago). They both told me that if I saw that my heart rate was unusually high, particularly at rest to call but if not....not to worry. So, that's what I did. If I don't take my uniphyll, I feel it major league the next day.
What did your doc say? I think all the docs are wrestling with Daxas as it is such a new med and new family of med and I think all of us our nervous about it. I have just started back on it....one pill every second day as per docs suggestion and if all goes well, I will go to every day in two weeks. If not, well, it's just not for me.
Keep us up to date please.
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Post by susanny on Apr 11, 2011 10:05:17 GMT -5
Shelley, glad to hear you are giving the DAXAS another go. Hopefully your body will accept it this time around, but if not at least you know you did your best.
Anxiously waiting to hear how you do, Sue
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Post by hourlibourli on Apr 12, 2011 19:13:29 GMT -5
Daxas...Sad news. After trying Daxas for another 12 days, I had the same nervesnouss, anxiety and almost Panic. My pulmo today suggested that I stop taking it. Bye Daxas!  |
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Post by susanny on Apr 12, 2011 22:20:11 GMT -5
So sorry, hourlibourli. You sure did give it the old try. I really wish it would have worked for you. Maybe the next trick down the pike. Don't give up.
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Post by zar on Apr 13, 2011 10:14:43 GMT -5
The drug Daxas seems to have a couple of very negative side-effects, among which is diarrhea, and I wonder if a change in diet would help.
Iseeyou,
All PDE4s have the same side affects,what ever you eat wont make a difference.
hourlibourli .
I would have tried 1 every other day or half a day.I cant see what harm it could of done.Nothing ventured, nothing gained thats my moto
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Post by Deleted on Apr 13, 2011 11:18:02 GMT -5
I was waiting to post until I saw my respirologist which I did today. It's three weeks today I've been on Daxas.
My stomach settled down and I had no problem with the diarrhea, went a week with no problems but, unfortunately it came back again on Sunday, whether it was attributable to the Daxas I don't know, but I'm OK now.
I did myself a real disservice on Sunday though, I put a pot on the stove with a bit of oil in it and had to run to the washroom, when eventually I came out there was thick smoke in the kitchen. By the time I got the pot outside I had breathed quite a bit in.
Since then my chest has been very tight and I'm coughing a lot.
Anyway, I got checked, FEV is 40% (no change). I've lost about 4 lbs, blood pressure OK, told him I'd come off the theopolyn, he didn't say anything except - ...... "Carry on - come back in two months, watch the weight though"
So I'm pressing on - hopefully I will see change down the road.
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Post by Blossom/Jackie W. on Apr 13, 2011 12:38:52 GMT -5
Well Hour.... I'm really sorry to hear that. Especially since you were noticing such a good effect.....  But; you gave it an honest effort and for sharing with us about your 1st hand experience..... we thank you. You know; I wonder if it isn't possible that those effects can't be perhaps medically controlled? Even temporarily till our bodies "adjust"? Surely there must be something; or perhaps something they're learning as they go? Just a thought. I know .... more meds... Shelley's docs are trying the every 2nd day route.... do you think that might be/have been an option worth pursuing? Good grief Helen! Guess I don't need to tell you how lucky you were! I think it's "interesting" that you'd have an FEV1 of 40% and they'd put you on Daxas. Were you having a lot of exacerbations? Good luck Shelley..... I hope it works for you. |
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Post by shelley on Apr 13, 2011 12:54:02 GMT -5
The every 2nd day routine has helped me tolerate other meds before; so it's somewhat of a given pattern for me. I tend to react strongly to meds for whatever reason, particularly anything that hits the gastro system. However, Daxas only presents in one dose (perhaps Nycomed will rethink this given all the reactions) and if I can't get up to the effective dose (1/day) after a couple of weeks then I will come off it totally. It should not be cut as the coating is a time release component. Admittedly, this is one nasty drug for side effects and the thing that scared me the most is it is being prescribed for those with mild to moderate COPD. When I was on the trial and unfortunately it was so long ago I don't remember when, I was already at the severe stage and that's all they were testing. They had hoped it would be a replacement, at that time, for uniphyll. It didn't quite work out that way for me but may for others. So many have gone through so much to try this med and I have great empathy and sympathy for what they experienced as have I. Frankly, I have a sneaking feeling that this drug may be revisited by Nycomed given the responses. I only know 1 person now that is still on it but like many things, chances are the drug will not be reviewed by the pharmas until we see really bad reports coming out of the U.S. However, I will say, no matter what, they are onto something good here as it does really help breathing and that's the first new med in ages.  |
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Post by Deleted on Apr 13, 2011 15:16:26 GMT -5
t Good grief Helen! Guess I don't need to tell you how lucky you were! I think it's "interesting" that you'd have an FEV1 of 40% and they'd put you on Daxas. Were you having a lot of exacerbations? . Oh yes, frequent hospital stays/visits, large doses of Prednisone (ugh)  |
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Post by Deleted on Apr 13, 2011 15:20:00 GMT -5
T Frankly, I have a sneaking feeling that this drug may be revisited by Nycomed given the responses. I only know 1 person now that is still on it but like many things, chances are the drug will not be reviewed by the pharmas until we see really bad reports coming out of the U.S. However, I will say, no matter what, they are onto something good here as it does really help breathing and that's the first new med in ages. I believe they are doing another report/trial to follow up on the people on Daxas. So that should be interesting. I feel a bit like a guinea pig! I do hope you will find you can tolerate it. |
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Post by supergrandma on Apr 13, 2011 17:24:20 GMT -5
I am just wondering if anyone else on Daxas has had a flare up. Ten days ago my breathing got worse so I started anti. and Pred. I am still very short of breath so tomorrow I am going to see the doctor however about three days ago I started shaking and it is really bad. I have had the shakes before with Pres. but this time its really bad and I am not sure if its the Predi. or the Daxas. My Doc hates to give me the Predi. I have to almost beg for it. I am only on 30 mg so its not a high dose and I really think it is the Daxas. I have had pretty much all of the side effects and eventually they go away that's why I don't want to stop it. I know the Daxas is to help with the breathing which I have seen an improvement but it has also has helped with a lot of other medical problems.
Here is the guestion is the shakiness a serious side effect that may be a sign of something else going on or Not and is there anything else that can be prescribed instead of the Predi. that will help open up the airways.
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Post by zar on Apr 14, 2011 5:02:36 GMT -5
t Oh yes, frequent hospital stays/visits, large doses of Prednisone ( I believe they are doing another report/trial to follow up on the people on Daxas. So that should be interesting. I feel a bit like a guinea pig! Helen,I have been a guinea pig ,and I am still on their "books",iI have found that they treat their guinea pigs quite well,in Canada the US,as you guys get payed. I dont worry about being payed,As the research unit I am under pays for a cab there and back and give me sandwiches and a cool drink for lunch,which I am happy with. Reading what you have wrote above,I think you should ask your doctor to see if he can refer you for this study, because while you are in the study they will look after you better than your doctor.Even now I will go every 6 months free,and they will give me the" full works"if need be.One woman who has been going for 3 years,said to me,If you have copd this the best place to be they have more equipment than NASA, www.worldpharmanews.com/nycomed/1630-react-study-to-evaluate-impact-of-daxasr-roflumilast-in-patients-receiving-standard-copd-treatmentp.s.No good for me I have E only. |
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Post by Blossom/Jackie W. on Apr 15, 2011 6:50:08 GMT -5
Supergrandma; have you been to the Dr yet? As for Pred and shakiness..... well; it can definitely make a person nervous and restless and I can see the quandry for you right now.... Is it Daxas, or is it the Pred?
Zar; we don't get "paid" per se in Canada, at least not that I'm aware of. They do give you enough to cover your lunch, gas (transportation) and parking. However; like in your country, you do get better care when you're in a trial or study and you do have access to facilities and Medical staff that the average patient may not receive.
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Post by zar on Apr 15, 2011 9:32:33 GMT -5
Jackie,I tell a lie,I get paid when I am a guinea pig for students(not a study) in their last year. I get £10, it just to show that they appreciate us being guinea pigs.When I get out of the cab,I pop into the bar for 1 or2. (with the money).Thank goodness they dont ask me what I do with the money  .Is embarrissing enough taking it, and I would not like to lie ::)If I got knock down by a truck,and if they take me to the same hospital. A nurse that knows me from earlyer may smells my breath,I could be in the hoo johny ;D |
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Post by supergrandma on Apr 15, 2011 19:43:13 GMT -5
Yea Blossom I did see my doctor and he really didn't answer my question and refused to give me the Pred. told me to ask my Resp. Doc. Really I didn't expect much else out of him but at the end of May I will be seeing the Resp. Doc. so I am sure he will want to talk alot more about the Daxas as he is very high up the ladder as a Doctor he's quite involved in trials.
Other than this bout of shakiness I have not had any more of the side effects, that is why I really don't want to stop taking it as I feel so much better. I was put on it because I have so many infections especially during the winter months, however, it doesn't seem to be making much of a difference but perhaps I have to be on it for a few more months.
Will keep you all posted. I am curious though how many people on this forum are actually taking the drug?
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Post by Blossom/Jackie W. on Apr 16, 2011 10:08:46 GMT -5
On March 29th Supergrandma you posted...... Then yesterday you posted...... So..... you've now been on it for approx 6-7 weeks now (not including your attempt before) That sounds promising...... You also said.... As for how long before there's a reduction in inflamation.... Good question. I suspect it would vary with the individual and since it seems the study results are based on a "reduction" of exacerbation frequency over 6 months or a year...... I think that might be the final test that would let you know if it's helping in that regard. At least I would think so. BTW Zar; sometimes you crack me up.... you really do.  And; it sounds like you receive about the same amount of $, as we do here. |
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Post by ronwtor on Apr 16, 2011 17:16:40 GMT -5
hi blossom. there is 3 day conferance in germany by nycomed 1day they will be disc. side effects.my study doctor respo flew out wed. afternoon.i will be in follow starting may16
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Post by Blossom/Jackie W. on Apr 20, 2011 11:59:54 GMT -5
Well Shelley,
as well as a couple of others....
how are you doing right now on Daxas?
You're all kinda leading the pack right now as to whether this med is worth a go/try.
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Post by Deleted on Apr 20, 2011 16:00:39 GMT -5
Not doing so good. Today is 26 days since I started on Daxas, and for the past few days I have had stomach problems (diarrhea) and have lost between 7 and 8lbs since I started. Now at 121 lbs and can't afford to lose anymore. The stomach issues stopped after a couple of weeks but returned, as I said, a few days ago. I am still coughing along with mucus, much as the same when I started on the Daxas. I am really wondering if this is worth it. If the weight loss continues over the Easter holiday I will call my respirologist and see what he says. That's my story - not a happy camper |
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Post by susanny on Apr 20, 2011 21:54:54 GMT -5
I don't know, Helen. If you aren't getting the desired effects from Daxas, it doesn't seem like it is working for you. That is really too bad. And Lord knows you don't want to let the weight loss go on, too dangerous. Seems like the only good thing you've gotten out of this is that you aren't constipated, . If the experiences on this forum are any indication of what was seen during the trials, I wonder how it ever got passed through in the first place. JMO |
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Post by zar on Apr 21, 2011 6:24:15 GMT -5
quote, Today is 26 days since I started on Daxas, and for the past few days I have had stomach problems (diarrhea) and have lost between 7 and 8lbs since I started. helen, I think you should see your doctor about you weight,do you think this was in 26 days?. This decision was based, in part, on the results of several large, international, multicenter, randomized, placebo-controlled trials of either six or 12 months' duration .............. ........While taking roflumilast, the most common adverse effects patients experienced were gastrointestinal upset and headache. Weight loss, averaging 2.2 kg, occurred in patients treated with roflumilastCOPD patients www.ncbi.nlm.nih.gov/pubmed/20689641 |
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Post by Blossom/Jackie W. on Apr 21, 2011 6:48:30 GMT -5
I was aware of the weight loss issue (which is a concern for people already underweight), as well as the other side effects but one would think that by the time you reach Day 26, the body should be adjusting to the "gastrointestinal upset."
Just a note of caution Helen since you're experiencing diarrhea on and off it appears.... please watch you don't get dehydrated.
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Post by shelley on Apr 21, 2011 7:38:42 GMT -5
Although there is an anticipated weight loss (I wish) it is supposed to resolve within a month. So...if you're in the underweight side of things, I'd be asking your doctor. We know that being underweight with COPD puts us at more risk. Unfortunately, not my problem. I have ended my affair with Daxas. My respirologist is at the meetings as well and new info is filtering. Generally within the leaks of communication (I refuse to divulge my sources ) I am hearing whispers of discontent regarding the side effects and very low rate of patient tolerance. I have also heards some squeaks about a smaller doseage level. So, we'll all have to wait and see. I'm sure we'll be getting info soon. |
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Post by zar on Apr 21, 2011 13:06:32 GMT -5
Roflumilast,is the first of PDEs,but there are others in the pipe line I have left out some wording as it maybe better to understand. PDE4 inhibitors induce anesthesia and emesis (vomiting) However,orally administered roflumilast and cilomilast.... but not ASP3258 inhibited.....induced anesthesia in rats and induced emesis in ferrets. Although ASP3258....inhibited airway inflammation completely,it had no *emetic* activity.As such,this compound may be useful in treating airway inflammatory diseases such as asthma and COPD. 2011 Feb 22. www.ncbi.nlm.nih.gov/pubmed/21315169 -------------- p.s.ferrets are used in studdies for food poisoning. *emetic*= vomiting --------------- GSK256066, ....PDE4 inhibitor efficacy is limited by mechanism-related side effects such as emesis and nausea. Delivering the inhibitor by the inhaled route may improve therapeutic index, and herein we describe GSK256066....an exceptionally high affinity inhibitor of PDE4 designed for inhaled administration. GSK256066 is a slow- and tight-binding inhibitor of PDE4B.....more potent than any previously documented compound,for example roflumilast..... tofimilast..... and cilomilast......... GSK256066 was highly selective for PDE4.... When administered by the intratracheal route to rats, GSK256066(dry powder formulation)....was more potent than an aqueous suspension of the corticosteroid fluticasone propionate Thus,GSK256066 has been demonstrated to have exceptional potency......and is being clinically investigated as a treatment for COPD Jan 2011 www.ncbi.nlm.nih.gov/pubmed/21205923 |
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Post by Blossom/Jackie W. on Apr 21, 2011 18:21:40 GMT -5
Well Shelley.... you too have given it a good try..... and a 2nd one! TY for letting us know. I think many of the study doctors were at the meeting in Germany.... I thought it was over (the meeting) earlier this week but; maybe a good time for families to take a vacation as well with it being a long weekend.....
You, my dear.... stay well and enjoy Easter!
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Post by Cavangirl on Jan 2, 2018 17:40:58 GMT -5
I am on this daxas for copd for the last 4 months but I can't keep any food in should I come off them I take them at night. I also tried in the day still the same.
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. Not to worry! 
. Got myself worked up unnecessarily.
But; you gave it an honest effort and for sharing with us about your 1st hand experience..... we thank you. 
.Is embarrissing enough taking it, and I would not like to lie ::)If I got knock down by a truck,and if they take me to the same hospital. A nurse that knows me from earlyer may smells my breath,I could be in the hoo johny ;D
And; it sounds like you receive about the same amount of $, as we do here.