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Post by Deleted on May 12, 2011 14:04:35 GMT -5
It is now seven weeks since I started on Daxas. The diarrhoea is still occasionally there and my stomach, at times, does not feel right with a heavy feeling – I am sure this is from the Daxas.
Apart from that, I am still coughing but not as much - the bouts of extreme coughing fits are much less, although I am still bringing up quite a bit of mucous. I do take one NAC a day so that helps (along with Vitamin C)..
A couple of days last week I was very out of breath, coughing/wheezing badly but I think they were just “off days”. I have noticed, overall, I am not as SOB - I used to be only able to walk a short distance without gasping for breath.
Oh, I've lost 6 lbs and staying at that - not losing any more.l
I see my respirologist on June 12 so it will be very interesting to find out what he thinks and what my FEV will be by then.
I think seven weeks is still too early to tell what the end results of taking this pill will be. Apart from the odd lapses I've mentioned above, I think I do feel better – only time will tell.
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Post by Blossom/Jackie W. on May 12, 2011 16:05:36 GMT -5
Helen; TY so very very much for your update. It sounds as if maybe, just maybe you and Daxas have found a match! Wouldn't that be wonderful?? And; if it does what it's hoped it will do (reduce exacerbations).... Tell you what.... I for one will be watching for your post Spirometry and Resp visit results.
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Post by susanny on May 13, 2011 5:36:15 GMT -5
Glad to hear what your experience is, Helen. Hope you do see an improvement in your testing, but if, as it's supposed to, it reduces your exacerbations, then you will really be seeing the benefits. I have a q? How large is your NAC? The only ones I've seen advertised are large and I can't swallow them. Are they capsules or soft gels, too? Thanks. Sue
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Post by Deleted on May 13, 2011 9:21:00 GMT -5
I take just one NAC (500 mg) and it's a capsule, not big at all. I have trouble swallowing pills and this is easy.
So, look for capsules. NAC has helped me - hope it does you as well.
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Post by williamkramer on May 16, 2011 12:23:48 GMT -5
Helen, Thank you for this post. I have been on Daxas a short while and find your info most helpful and encouraging. One question... What long acting bronchodilator are you taking? It appears from the literature that tiotropriam (Spiriva) is the most effective for improving lung function. I am on Foradil and am considering a change. Thanks, William
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Post by hugahusky on May 16, 2011 16:16:14 GMT -5
Question?
What is NAC?
Thanks
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Post by Deleted on May 16, 2011 18:52:10 GMT -5
Helen, Thank you for this post. I have been on Daxas a short while and find your info most helpful and encouraging. One question... What long acting bronchodilator are you taking? It appears from the literature that tiotropriam (Spiriva) is the most effective for improving lung function. I am on Foradil and am considering a change. Thanks, William I take Symbicort 2 x 2 a day and Spiriva
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Post by Deleted on May 16, 2011 18:53:10 GMT -5
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Post by Deleted on May 27, 2011 14:34:12 GMT -5
Well, that's me done !! Just had a doctor visit (not respirologist - couldn't wait. Stomach really bothering me, pains, backache. So coming off and having a respite from it. Disappointed but I don't feel too good. Cést la vie,.
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Post by susanny on May 27, 2011 16:33:55 GMT -5
Ah Helen, I am so sorry you had to stop taking the Daxas. I know we all had high hopes for you, but with your stomach the way it is it just is too dangerous. Did you experience any vomiting with the upset? That's what scares me the most, the possibility of aspiration with the nausea. Just not so worth it. I sure hope it doesn't take long for you to get back to feeling better. Like....right away! I think you need a big hug...... Sue
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Post by zar on May 28, 2011 4:12:24 GMT -5
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Post by zar on May 28, 2011 4:19:13 GMT -5
Nycomed's co-marketing arrangement for Spain with Almirall for its new COPD drug Daxas (roflumilast) is on the face of it no big deal. Almirall can launch its own brand, but only after a delay of several months following Nycomed's own Feb 2011 launch of Daxas there. There have been doubters on the prospects for Daxas. I believe this news endorses Daxas's progress in the market internationally, as well as presaging more important developments. Delayed launches of second, co-marketed brands are quite unusual these days. There has to be critical mass: they don't work for modest-sized products. So Almirall must think that the product is big enough to warrant taking rights to a separate brand, rather than, say, to co-promote Daxas with Nycomed. Almirall will have been party to figures on how the Spanish launch of Daxas is going but also how the product has been faring elsewhere in Europe since launches started in Sept 2010. Almirall must have formed a positive view from Daxas's sales progress before deciding to proceed with the deal. (Like some other observers, perhaps Almirall was too sceptical about Daxas to get involved earlier.) And so in the absence of any hard figures from Nycomed so far on Daxas's progress, the Spanish news can now be taken as something of an endorsement for Daxas's progress in Europe to date. Daxas does very much fit Almirall's existing strategy on COPD - and helps fill a gap due to delays to its aclidinium product for this indication. There are other potentially much more important motives for the current deal on Spain - it could just be the first move in further cooperation between Nycomed and Almirall. •It sets up Almirall for a possible project combining its aclidinium with Daxas in a fixed combination. As soon as Daxas has credibility in the market, companies with other COPD drugs are likely to be enthusiastic to combine Daxas with their drug. Such a combination could in the long term be the big prize - potentially outselling the plain components, much in the way that Advair (salmeterol + fluticasone, GSK) has done in the asthma market. •The two companies are fairly complementary as far as European marketing strength is concerned, Northern Europe being Nycomed's strength, with Almirall stronger in Southern Europe. Further product level deals on Daxas, on other products, or even a merger of the two companies may eventually make sense. www.glgroup.com/News/Almirall-deal-with-Nycomed-says-more-about-Daxas-prospects-than-meets-the-eye-53867.html
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Post by zar on May 28, 2011 4:33:41 GMT -5
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Post by Blossom/Jackie W. on May 28, 2011 8:22:38 GMT -5
Well Helen; I'm sorry to hear that. Heaven knows you "hung in there" and gave it a fair try! Zar; were you aware that Nycomed has sold (to be completed by September) its interest in many of their product /lines (except dermatology) to the Japanese pharma company Takeda. It includes Daxas... Here's a bit more info.... www.nycomed.com/media/news-releases/2011/takeda-to-acquire-nycomed/
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Post by maryaz on May 28, 2011 23:24:43 GMT -5
Helen, We are not really acquainted but I have been keeping an eye on how you have been doing with the Daxas. Sorry to hear you had to give it up. Sounds like the better thing to do. I really wish it had worked for you. Hope you start feeling better real soon.
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Post by Deleted on Jun 1, 2011 7:51:50 GMT -5
After coughing and I mean coughing for the past few days (since I came off Daxas) I have decided to go back on it. I just can't take the coughing which proves the Daxas did work Will see what happens this time - of course I'm checking with the respirologist first. Sue, I'll take that hug now
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Post by Blossom/Jackie W. on Jun 1, 2011 8:41:49 GMT -5
What a roller coaster ride for some of you! And Helen; I guess you'll know for sure if you do in fact fo back on the Daxas and if your symptoms decrease again. But you know.... and just off the top of my head.... I don't call recall reading/hearing anything about Daxas and the effects re: coughing. Hmmmmmmm
Anyway; please let us know what your Resp. says about going back on it and good luck.
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Post by susanny on Jun 2, 2011 8:44:38 GMT -5
Helen, Was coughing one of your symptoms prior to going on Daxas and then it got better while on it? I can see what a difficult decision this would be, then, as to whether to continue and experience side effects or get rid of COPD symptoms. I have a suggestion that I think I'm mentioned to somebody else...Zofran. It is an antinausea prescription med that really helps big time. It has enabled me to be able to eat normally again and not feel sick all the time. It's a drug they give people on chemo treatments, too. I don't know if that sounds like something that would help what you are feeling, but if it is, I'd ask the dr. for it. Works really fast, too! Good luck and know we are thinking of you and rooting for your success. Sue
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Post by Deleted on Jun 6, 2011 9:23:37 GMT -5
Yes, Susan, I always coughed (for years) until exhausted.
I came off Daxas (again) three days ago after severe diarrhea - was only back on it for two days) and felt so ill. I went down to 122 lbs. At that weight it is definitely recommended to come off of it.
No way I could tolerate it any more. Feel better already - still coughing though - and, Blossom, it definitely did abate while I was on that wretched pill.
Hopefully something will be discovered to help us....keeping fingers crossed
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Post by zar on Jun 6, 2011 12:22:15 GMT -5
Helen,It is better that you came off Daxas. They say that in the studies weight loss was between 2 and 2.1 kgs?. Weight loss with Spiriva was mainly fat mass?.
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Post by zar on Jun 6, 2011 12:37:21 GMT -5
Should I be worried about the weight decrease associated with Daxas®? Daxas® was associated in clinical studies with a mean weight decrease of approximately 2kg.1,2 Weight loss occurred primarily during first 6 months of treatment. After discontinuation of Daxas®, the majority of patients had regained bodyweight after three months.1,2,11 Therefore, it is recommended that patients who are underweight, or are at risk of becoming underweight, should be monitored closely for changes in their body weight throughout the Daxas® treatment period. It is interesting to note that weight loss occurred in patients in all weight categories, but was most pronounced in obese patients.1,2 Furthermore, bio-impedance measurements indicated that the weight decrease was primarily fat mass.12 At present, there is no clear explanation of the mechanisms behind the weight decrease associated with Daxas®, but this will be addressed in further clinical studies. www.daxas.com/en/roflumilast/faq#Q11 ------------------- There is something else in the pipeline
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Post by ronwtor on Jun 9, 2011 22:20:57 GMT -5
helen.i have gained 6lbs from12 lbs. loss
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Post by ronwtor on Jul 3, 2011 11:45:22 GMT -5
hi helen. i like you had stomach prob. i got my doctor to pres. nexium 40mg
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