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Post by shelley on Mar 9, 2011 9:08:31 GMT -5
Thx super grandma! Perhaps it's worth a try. Ironically one of the reasons my doc put me on it is like yourself I'm (should I say) bound tightly. As a result of the size of my lungs and how they are pushing on my internal organs, I do not digest well and transit time is incredibly slow. So, of course, she thought this might help. Yep! It did!  I got the headaches at the end and they were so bad and so endless that I started on oxycodone for them. WOW! I was sleeping but only about 4 hours but I sure did have energy. A lot like prednisone burn!  I'm still trying to figure out if the pill can be halved to allow one to build up to the full dose. I'm sitting here with 3 months of the stuff so it would be nice if it would work, not that I had to pay for it but my breathing really was improved! |
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Post by zar on Mar 9, 2011 11:31:01 GMT -5
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Post by ronwtor on Mar 15, 2011 21:14:52 GMT -5
this drug was bro.to treat chronic bronchitis. bronchitis is not the same.this drug does not help emphezema. i have been on daxas for8weeks.the first 2 weeks the side effects clear up
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Post by hourlibourli on Mar 16, 2011 9:28:24 GMT -5
Day 20 on Daxas.
I experience some days a little nervesnous about one hour after taking the pill. I take a Rivotril 0.5 mg and it clears. My pulmonologist suggest to keep going like this. BREATHING is much better. I see a big improvement. My saturation remains much higher, sometimes 97% without O2 at rest. Upon exercise, I become much less SOB, with sat above 90% with 2l/m. Better than before Daxas.
;D
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Post by shelley on Mar 16, 2011 12:38:07 GMT -5
I'm letting my body heal a bit since my last try on it and then will reintroduce it to my system and see if I can tolerate it. During the short period I was on it, I did feel my breathing was better so it would be a shame if I still can't tolerate it.
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Post by sandy07 on Mar 16, 2011 14:23:16 GMT -5
Thanks guys. Keep us up to date. We're watching.
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Post by Blossom/Jackie W. on Mar 17, 2011 6:42:09 GMT -5
I am soooooooo pleased to hear that it seems to be working for some of you!
I see Ron has started a new thread re: PFT results. I hope that for those of you taking this med, that you will post (in that thread) what your test results show when the time comes.
And Shelley; let us know if you find out about a half pill that you were talking about, at least till your body adjusts?
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Post by hourlibourli on Mar 24, 2011 12:19:25 GMT -5
Bad news:
In the last 10 days or so, I felt very nervous and almost panicky at times.
My pneumologist told me to stop taking Daxas for a week to see if these symptoms disappear....
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Post by Blossom/Jackie W. on Mar 24, 2011 13:19:47 GMT -5
Oh dear Hourli.... you were doing so GREAT on it; particularly with your breathing! Do you mind if I ask (sorry I can't remember... I guess I should check your previous posts) if you have a strong Chronic Bronchitis element? And; I also know that you've started Rehab.... Is it possible that you're also anxious becasue of it? (Rehab)
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Post by hourlibourli on Mar 24, 2011 16:36:42 GMT -5
My COPD: yes, strong Chronic Bronchitis.
At rest my Sat is around 94-96%, without O2..
When walking, I desaturate down to 82-84% . With oxygen, Portable Invacare XPO2, I stay above 92-94%.
Now, 2 days without Daxas, and no more nervesnouss/anxiety.
I'm going to Rehab in June.....so that doesn't make me nervous at all!
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Post by Blossom/Jackie W. on Mar 25, 2011 9:09:50 GMT -5
Sorry hourli.... I thought you had justed started Rehab.
I was looking through the complete product monograph (attached it here below) that also includes clinical trials results, adverse events etc. It shows in at least the one study that nervousness is/was reported in <1% of the participants and at what point for same you should contact your Dr. Obviously yours must have been bad. What I didn't see, and I may have missed it, is whether this is considered a "temporary" adverse reactin that may pass or a permanent one for that individual. Any idea?
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Post by Blossom/Jackie W. on Mar 25, 2011 11:30:20 GMT -5
My apologies; I made an error on the above numbers..... Anxiety was 1.4% for those on Roflumilast (Daxas) and 0.8% for those on a placebo. And; I guess we'll wait and see what happens Hourli when you do the "retry" next week. Good Luck!
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Post by hourlibourli on Mar 27, 2011 10:40:15 GMT -5
I am on my 5th day WITHOUT Daxas. Nervesnous and anxiety have disapeared. And back to beeing SOB as before taking Daxas.  |
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Post by Blossom/Jackie W. on Mar 27, 2011 10:59:04 GMT -5
Hang in there Hourli..... like you said, you're gonna be trying it again. How long did it take before the SOB returned after you stopped?
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Post by hourlibourli on Mar 27, 2011 13:22:42 GMT -5
Couple of days..... |
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Post by zar on Mar 28, 2011 7:23:03 GMT -5
Why dont you ask your doctor if you can take half a tablet a day,I understand others are doing it untill their side affects subside?.
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Post by shelley on Mar 28, 2011 8:04:00 GMT -5
The problem with trying to take 1/2 a pill is that the coating is there for time release and you can imagine what will happen if you breach that. I seriously question their reporting of the side effects as I have not known anyone, except perhaps Ron that has been able to tolerate it. By my math, that's about a 99% fail rate as I'm in contact with 83 people that have tried it and gotten terribly ill in one way or another. It also makes me nervous as so many of the pharma companies has been caught misrepresenting their application info when bringing out new drugs. I'm quite nervous about things now and am staying away from new drugs until they're out there awhile. Daxas helped my breathing and NO, I do not have chronic bronchitis but I DO have chronic inflammation in my lungs which has caused the emphysema and hence, why Daxas improved my breathing so much but the cost of that was far more than I'm willing to pay. I'm at TGH (transplant hospital) tomorrow and will ask my doc there what they're thoughts are on the subject.
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Post by supergrandma on Mar 29, 2011 2:18:36 GMT -5
Just wanted to let everyone know that the first time I tried the Daxas I had a lot of side effects especially severe headaches so I went off it for a month. I started back on it a month ago and no more headaches, or diarrhea. It has helped with my breathing but I just seem overall feeling so much better. I have a lot of energy however, I do have a problem with sleeping, but so far nothing I can't handle.
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Post by Blossom/Jackie W. on Mar 29, 2011 6:02:06 GMT -5
That sounds very promising Supergrandma!
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Post by zar on Mar 29, 2011 6:14:47 GMT -5
The problem with trying to take 1/2 a pill is that the coating is there for time release and you can imagine what will happen if
you breach that.
shelley,
how do you know this,and what is the period of the time release?.
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Post by shelley on Mar 30, 2011 13:31:30 GMT -5
Hey Zar, I spoke to my Respirologist who in turn spoke to the pharma company and advised me. I had already heard the same thing from my pharmacist but she wasn't quite sure it the coating was enteric or time release but advised against splitting....so, went to the doc.
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Post by shelley on Mar 30, 2011 13:32:21 GMT -5
sorry Zar, I didn't ask about the actual time release specifics ie how long, half life etc etc
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Post by Deleted on Mar 30, 2011 15:28:27 GMT -5
Shelley...can you give me some links or quotes or references for those claiming corticosteroids have little benefit to COPDr's. I already know all steriods have seriously harmful side effects, but not that the corticosteroid is deemed largely uselsss for us COPDr's.
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Post by Helen Audrey on Mar 30, 2011 22:14:45 GMT -5
I have been on Daxas for seven days, have had very slight nausea and occasional running to the bathroom but that has been a bit worse today.
I also have a lot of mucus but actually no more than usual which is one of the reasons I'm taking it. I have chronic bronchitis/emphysema and the coughing is extreme from sun up to sun down.
Daxas is an add on - one does not stop inhaled medictions - I'm on Spiriva and Symbicort.
Only just found this website today after searching the web trying to find users of Daxas. Now I know i will keep you updated on my progress.
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Post by Helen Audrey on Mar 30, 2011 22:18:56 GMT -5
Well the nauseau is back big time but I'm going to stick with it for awhile and see if it calms down as when I researched the side effects; it was noted that they went away with time. That is the same about a lot of meds. The only other thing I'm a bit nervous about but my respirologist is not, is that I'm on theophylline 600 mg/day and the insert does say that it has not been tested with it. As for my breathing, if I keep it up we'll know at the end of March as I have a PFT at the transplant clinic here in Toronto. Also found out that Manulife does cover it 100% for me; my pharmacist was wrong. I came straight off of theophylline - it is not conducive with Daxas and says it in the literature. I do not thinki Daxas is to help breathing but to deal with the chronic coughing and mucus.; |
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Post by chrisw on Mar 30, 2011 23:08:56 GMT -5
ICU,
There will always be someone claiming that this drug, or that drug, does not help - I once saw an article saying that there weren't any drugs that helped COPD, so don't bother prescribing them!!! (I nearly hunted down and slew that idiot!!).
The best advice for treatment is to follow the published guidelines, but remember that we are all a bit different (some of us VERY different ;D). Some that are recommended may not help this person, and some will be really helped by something that is not normally recommended for COPD (the most miraculous drug for me was Singulair - not supposed to be recommended for COPD, only occasionally for asthma).
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Post by shelley on Mar 31, 2011 10:16:31 GMT -5
Hi Helen,
You're right mostly about Uniphyl. However, the prescribing documents and application for approval only say that it was not tested with Uniphyl and therefore should not be prescribed at the same time. Uniphyl, as you know, is a stumbling block for many drugs even most antibiotics but that doesn't necessarily mean it's an absolute and my medical partners have always just watched me when adding something new to the mix. My interpretation of that is, like so many other drugs that may or may not have probs with Uniphyl; they didn't test it with Uniphyl and therefore don't know. If there was a prob, IMHO, it would prob show up with either increased heart rate or it would decrease the effectiveness of either uniphyl or vice versa. I have been on uniphyl for far too long to ever come off it and yep, have tried; many times. It was one of my first meds after diagnosis 21 years ago. Think it was prob about 15 years ago or so that I started it. On the other hand, please keep in mind that I'm at the Gold Stage 4 level, very severe and frankly, the docs will try anything, within reason to keep me comfortable.
As for Daxas improving breathing, again IMHO, if you get rid of the mucus and you stop the coughing chances you're going to breathe better. However, I do not cough, I do not have mucus and I can state for a fact, my breathing did improve. However, the side effects were just too much for me. As Chris above said, we are individuals and react differently to different meds. Daxas acts on the inflammation in lungs. My disease has always been of an inflammatory nature just w/o all the coughing and mucus. Therefore, it does make sense that it might help my breathing. Quite sad actually, I was talking to my pre-transplant doc a couple of days ago and we discussed that it was too bad the side effects, at this moment, outweighed the benefits. However, as he mentioned there are many things coming down the tubes in the near future, so who knows?
If you came off of theophylline abruptly, that could be a reason why you may not be feeling that you're breathing is improving on Daxas. Suppose it depends on what your theophylline dosage was and how long you were on it. However, it does carry a warning not to stop it abruptly as that can cause severe probs as well. I would keep a real close eye on that. However, I'm sure that if your doc told you to stop it that way, he/she must feel it was safe to do so.
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Post by Deleted on Mar 31, 2011 10:59:16 GMT -5
You're absolutely right in all your comments. Thinking it over, yes, it is obvious that Daxas will help the breathing. I'd got that into my head because my respirologist had told me it would only help the coughing and mucus.l He also told me I could take Uniphyl with Daxas but when I read all the info I decided to come off - and, yes, I did it abruptly - nothinhg has happened to me yet!!
Unfortunately my coughing and mucus is so bad I end up with terrible excaberations so, hopefully, Daxas will work.
Today (8th) is not such a good day - visiting the bathroom frequently.
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Post by chrisw on Mar 31, 2011 14:51:16 GMT -5
Shelley, Wikipedia says the following about theophylline (http://en.wikipedia.org/wiki/Theophylline ): Like other methylated xanthine derivatives, theophylline is both a
1. competitive nonselective phosphodiesterase inhibitor, [11] which raises intracellular cAMP, activates PKA, inhibits TNF-alpha [12] [13] and inhibits leukotriene [14] synthesis, and reduces inflammation and innate immunity [14]
2. nonselective adenosine receptor antagonist [15], antagonizing A1, A2, and A3 receptors almost equally, which explains many of its cardiac effects
I suspect that because Daxas is a selective phosphodiesterase inhibitor (PDE4) there would be a significant reason not to combine the two. I fully understand your reluctance to give up theophylline when it has worked so well for you (and this could also be why there were benefits in breathing with the Daxas) but it could also be the reason that the side effects were so much greator. The Daxas without the Theophylline , or even half doses of each, might give the benefits with less side effects. Total guess on my part, but maybe worth thinking about!! |
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Post by susanny on Mar 31, 2011 21:26:57 GMT -5
I have a thought for those taking Daxas and having side effects significant enough to cause some serious or inconvenient problems. Since you can't cut the med in half, what about taking it every other day? Just a suggestion and maybe worth trying. I don't know if this is something that has to build up in your system or if it's out of you within a 24 hr period.
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