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Post by Blossom/Jackie W. on Apr 22, 2011 11:41:31 GMT -5
I think it's interesting the number of views (2,400 +)on just the one Daxas thread (though we've had several threads) and though we've had some folks posting their experiences for which we are so very, very grateful. I would hope there's more people trying it and I'm further hoping they'll share. Or maybe it's like a "wait, see, read" what's happening with others that are currently on the drug or OR their doctors are reluctant to prescribe it yet like Valerie’s in Spain. As for our friends from the Dutch forum it doesn't look like it's been prescribed for many, if any, of them yet from what they've told us. Anyway I was going through the other thread and give or take the time frame..... the following is what I summarized at least up to the “reported” info... Please understand this is simply from what's been posted and hopefully I didn't make any "carrying over errors.” Ronwtor's been on it 3 months, says he's having very good results. He only had side effects the first two weeks. Supergrandma was on it but had to stop after 4 days due to nausea, headache and diarrhea. She made a 2nd attempt with no headaches or diarrhea but developed sleeping difficulty and nervousness. At weeks 6-7 no side effects though she did have an exacerbation. (She had nervousness but is unsure if it's the Pred or Daxas) I "think" she's still on it. Shelley made 2 attempts - 1st attempt - On Day 6 the nausea hit but Day 8 the nausea left . Developed sleeplessness and dizziness. 2nd Attempt - she tried 1 pill every 2nd day. The nausea returned and by Day 12 she had extreme nausea and extreme weakness. The drug was abandoned. Hourili - made 2 attempts - 1st attempt - By Day 6 he developed Diarrhea and nervousness. Day 8, no adverse effects. Day 10 no side effects. Day 20 some nervousness, ultimately extreme nervousness and panic. The Drug was stopped. 2nd attempt was one week later and stopped at Day 12 due to extreme nervousness, panic and anxiety HelenAudrey - By Day 7 slight nausea and diarrhea. By Day 8, frequent bathroom trips. By Day  her stomach settled and she developed dizziness. By week 3 the diarrhea briefly returned. Last report she had lost 7-8 pounds but is still hanging in there. One of the interesting things is that a few of you had noticed a noticeable decrease in you SOB (shortness of breath) though "theoretically" here in Canada it's approved or intended to reduce inflammation thus reduce exacerbations frequency and/or I believe, severity of same However; even though it has shown only a "slight" increase in FEV1, one would assume that at the severe, or probably "more severe" GOLD stage that "any" increase is appreciable. In all fairness Daxas has shown a reduction in exacerbations and it does seem to help the more severe but it’s like a potential double edged sword. I was reading the European “Conditions or Restrictions With Regard to the Safe and effective Use of the Medical Product to Be Implemented by the Member States” www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Conditions_imposed_on_member_states_for_safe_and_effective_use_-_Annex_IV/human/001179/WC500095210.pdfWithin their recommendations re: the Educational Material for the Prescriber (Dr’s) as it relates to Daxas (you may find it an interesting read) Recently I’d been trying and hoped to have a Dr from Nycomed answer some questions you might have on the product (not dosing or recommendations or anything like that since that’s between you nd your physician) He appeared to be leaning in favour of it. Unfortunately his boss wasn’t though in all fairness I do understand because of restrictions and limitations and legal reasons. It was however suggested that you, me, any of us could call their Medical Information Dept and ask questions. I did that. Sadly I only received the answer “verbatim” off the product monograph. (BTW In a earlier post I I put up the Monograph for you) Do you have an opinion on Daxas yet? Do you think it might be a product for you? Or, now that you’ve tried it what did you find? Your opinion, your experience and your feedback is so helpful to so many in trying to reach a decision…. As in … Should I or shouldn’t I?Not since Spiriva have we had a med developed specifically for COPD and every indication is that there's more in the works. So; do you try this one or hold off for another? What do YOU think? Finally; please keep in mind that this is a public forum and as such anyone can and does read. Your post does get reviewed believe me . We're also patients and as such we do what we do regardless of which COPD forum......... at the end of the day we all share and learn from each other's experiences and knowledge. (I edited this post and removed some info that I felt had no bearing on this thread) |
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Post by maryaz on Apr 23, 2011 23:57:39 GMT -5
Very interesting. I thank you, Jackie, and/or whoever else may have helped in gathering this information. It is appreciated
(This has only been modified to remove an egg from the Easter Egg plant/hunt.
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Post by ronwtor on Apr 24, 2011 10:59:11 GMT -5
hi blossom. after being on daxas 14 weeks after 4 years i can fin. take a hot bath 15 min in hot bath. before 1 could only take a warm shower no longer then 2min. with shower courtains wide open and my wife standing in bathroom doorway
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Post by Deleted on Apr 24, 2011 12:52:25 GMT -5
Having been on Daxas now for 30 days I have not yet formed a constructive opinion. The side effects I had (on and off) have nearly diminished but I am still having problems with coughing/mucus.
I have decided to persevere. I've been looking up all the details and found that it takes 4 to 8 weeks to see an improvement.
I have gained 3 lbs - eating like crazy ;D.....but have the reverse of diarrhea, not going into the details!
So I'll report more as I go along.
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Post by ronwtor on Apr 24, 2011 19:28:00 GMT -5
hi helenaudry. daxas makes you cough up phelm. i been on daxas 14weeks i cough up phelm 12 times a .day. ihave lost 12pounds onit
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Post by susanny on Apr 24, 2011 20:59:45 GMT -5
For me, there are too many unpleasant side effects, and possibly even dangerous for me personally. I won't be interested if it becomes available here in US. I'll wait for something else.
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Post by maryaz on Apr 24, 2011 22:45:13 GMT -5
Thanks to all of you that are enduring with this and sharing your situations.
Helen, You mentioned having the opposite of diarrhea. Just want to be sure and caution you to not let that go too long. My husband fights cancer and has a lot of trouble with that as side effects. You don't want to let it go. Wanted to mention it just in case and to thank you all.
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Post by Blossom/Jackie W. on Apr 25, 2011 7:30:11 GMT -5
You're very welcome Mary and no; it was me. (in response to your first post) All I did was compile the info that the others were kind enough to supply all of us with.
Ron; I can't tell you how happy I am for you! It sounds like yours is a true success story and hopefully the 12 pounds that you've lost was needed (or you could afford to loose it?)
I wonder why there's weight loss with this drug though..... and; any idea how long before the loss stops? I wondered if it's related to the diaharea..
Ron, are you still loosing? You've been on it the longest at 14 weeks.
Helen says she's gained 3 pounds, but, she's not making the frequent bathroom trips anymore either. And; yes please keep us abreast. I sure hope it works for you in the long haul!
I don't see my Resp Dr till early June and I know he was, maybe still is, a supporter of this med. It'll be interesting to see if he suggests it for me. Though I doubt it...... due to the weight and cancer issue.....
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Post by hourlibourli on Apr 25, 2011 10:10:56 GMT -5
My experience with Daxas:
It was definetely helping my breathing. No figures, but I could do things, like climbing stairs, much easier.
BUT:
Side effects were too much for me: nervesnouss, anxiety, even panic and trembling, plus diarrrhea.
So my pulmonologist agreed that I should stop talking it for some time .
I had a first try which lasted 27 days, followed by a "resting period" of 10 days without Daxas, during which side effects disappeared.
Second try: same side effects, during 12 days.
So: THE END.
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Post by ronwtor on May 2, 2011 23:13:53 GMT -5
hiblossom. i have dropped wt. from 192 lbs. to 180 lbs saw doctor fri he weighed me. i am down to my weight when i started in rehab in 2008.when i weighed 192 that was from pred. i have gone from size 36 to 34 some pants 32 waist
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Post by Blossom/Jackie W. on May 3, 2011 8:27:15 GMT -5
That's a lot of weight Ron.... (at least for some of us) let us know if you continue to loose will you please?
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Post by ronwtor on May 12, 2011 11:15:37 GMT -5
hi blossom. saw resp. he stated you will gain weight back thats how daxas reacts. fvc is now 27.5 fevi 26,4. doing very well
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Post by Blossom/Jackie W. on May 12, 2011 11:17:15 GMT -5
What % of increase is that Ron over what you were?
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Post by ronwtor on May 12, 2011 22:39:13 GMT -5
blossom.3weeks ago fvc was25 .fevi 24.8.iam exhaling more air then in 3 yrs. daxas is now being used world wide accept u.s.a. my resp. stated to me wed. iam gaining back electasity in my lungs
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Post by Maureen Crowe on Jul 26, 2011 15:00:57 GMT -5
I have been on Daxas for 5 months and have not had a flare up in that time, usually for me I have one every two or three months. got thru the side effects in about two months diarrhea and have lost a lot of weight but I feel great, I have had COPD now for 2005. My Doctor is wonderful, he has got me to this point, I am 71 years old and feel 50, maybe younger!
Daxas is a marvellous new drug.
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Post by Blossom/Jackie W. on Jul 26, 2011 17:31:39 GMT -5
Good for you Maureen! Hey.... you're doing good and that's what's important.
It seems that those of you that it works for; it works pretty darn good! Let us know please how things progress.
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Post by supergrandma on Jul 27, 2011 0:39:18 GMT -5
Just to update everyone. I am still on the Daxas and no side effects anymore. I have not had a flare up since Apr./May but I know that my breathing is better this summer than it was last year. I definitely overall feel much better. Will keep you updated.
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Post by susanny on Jul 27, 2011 6:27:35 GMT -5
That is fantastic and encouraging news. Now we just have to get through that average exacerbation period of the year and see how you do then. I'd like to see how someone does over the course of an entire year on Daxas. Thanks for keeping us up to date on how things are going for you.
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her stomach settled and she developed dizziness. By week 3 the diarrhea briefly returned. Last report she had lost 7-8 pounds but is still hanging in there.
