Daxas/Roflumilast

[shelley]

Chris, I realize the potential conflict between theophylline and most of the meds I'm on. However, I think there comes a time when we have to realize that as individuals there are no clear lines and while I may not have issue with certain meds or agree that a limited and consentual risk is worthwhile given the extent and nature of how this disease has manifested within me; it may not be an advisable route for someone else. Unlike most, I have never had any side effects from theophylline but also cannot lower the dosage without almost crippling results; by this time, I would probably end up in emerg in severe bronchospasm. This is just one of those cases where we have to admit to our individuality and agree to disagree on certain elements. At the same time though, I would strongly advise anyone to always check with their doctors regarding any meds or procedures and ensure that everything they take or do is done with informed consent and that they completely understand potential risks and side effects. Although we are all different, one thing is static and that is that we must always work in tandem with our medical partners.

[hourlibourli]

Back on Daxas today. After having had annoying side effects: nervousness, anxiety on my first try, my pulmoDr had suggested I stopped taking it for one week. So today, I start taking it again. Anxious to see what will happen. I keep my fingers crossed as Daxas really helped my breathing!

[Deleted]

9th day - still running to the bathroom, no nausea. Wouldn't say I was 100% but keeping going (no pun intended)

Just phoned pharmacist to ask if I can take Immodium - "Yes"

[Blossom/Jackie W.]

Guys; I've gotta thank you for keeping us up to date..... It is sooooo appreciated by many! Just look at the number of views of this thread.... 1,400 plus. We're all watching and reading and learning thanks to you.

Thank you so much!

[susanny]

Yes, thank you so much for sharing your experiences.

Hourlibourli, good luck with your second try. Seems like there's been a couple here who did what you are doing and had better luck the 2nd time around. Let's hope it's good for you.
Helen, glad that you can take the Imodium. I hope that you are drinking extra fluids to compensate for what you are losing from the diarrhea. Also, be sure to watch for weight loss as it sounds like you are losing the nutrients and calories from what you are ingesting. That could be worrisome. Does your dr. know you have diarrhea this bad?

[Deleted]

Ideas about Daxas Side-Effects

From these COPD boards I've learned there's a large number of people suffering from severe emphysema and have specific medications regimines which produce a number of side-effects. Though drugs like Daxas do provide important improvements in their breathing, the side effects are so severe as to out weight the benefits, and I'm concerned how those side-effects could be reduced, apart from merely more presciption drugs.

Some can see many Doctors enter medicine for what they can take out of it for themselves, not their concern for others, and it's far too common a Dr. prescribe another medicine for every symptom they have. Some people have been put on so many prescriptions drugs that it infact kills them or otherwise makes things much much worse for them. In this I prefer to look first for natural dietary sources for symptom treatment. Animals in the wild have a kind of 'intuitive' sense about what they can eat to help them, and so I take a lesson from them.

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. Has anyone thought to remove as much fibre from their diet as they can ? Say, for example, starting a diet based on carbohydrates and proteins, and also excluding caffeines like coffee, tea, chocolate, etc.

Quick-to-digest bleached white flour products have the effect of 'blocking' me up, and I wonder if a diet comprised mainly of those, like pasta, white bread, etc., along with quality proteines, would relieve some of the diarrhea.

Removing fibre will remove whole grains, vegetables and fruit from ones diet, and that will create an entirely new set of troubles, so I am left them with supplements to provide those missing nutrients. eg; a qualtity vitamin & mineral supplement, taken with meals.

Here's a long list of foods and their fibre content ; there's also a link to a page listing no fibre foods.

www.wehealny.org/healthinfo/dietaryfiber/fibercontentchart.html

Another concern I have is that severe diaarhea will remove the very important electrolytes which are body's must have. Calcium, sodium, potassium, and magnesium are the 4 main electrolytes most often mentioned in the circumstance of dangerous depletions.

However, the biochemistry is our body's nurtional needs is very complicated, where specific nutrients need be balanced with other nurtients, and this needs an advanced knowledge of these inter-actions which I don't have. On the other hand, health science often doesn't know the whole picture on these things either.

I suppose, if a supplement would not easily and safely provide the needed electrolyte, then it seems necessary a dietary source be used. eg; bananas are a good source of potassium.

[Deleted]

Apr 1, 2011 22:21:07 GMT -5 susanny said:

Yes, thank you so much for sharing your experiences.

Helen, glad that you can take the Imodium. I hope that you are drinking extra fluids to compensate for what you are losing from the diarrhea. Also, be sure to watch for weight loss as it sounds like you are losing the nutrients and calories from what you are ingesting. That could be worrisome. Does your dr. know you have diarrhea this bad?

Thank you for your concern, it's appreciated. Yes, I'm drinking a lot but only water so will go out today and get something that will replace the electrolytes I may be losing. So far the Immodium is working so will see what today brings forth. Was going to the One of a Kind show here in Toronto but that's not going to happen now, don't feel like walking around there.

Will see my Doctor on Monday but, as I said, so far the Immodium is helping.

Edited to say I am taking a probiotic supplement, plant sterol yogurt, rice in my soup, etc. etc. I am pretty good in knowing what to eat - I am trying, oh dear. Hopefully today will be a better day.

[susanny]

That's great news that the Imodium is working for you! But a real bummer about missing out on that show you mentioned. I can understand not wanting to chance it, though. Oh well, better breathing or a show.....I'd take the breathing any day.

What is One of a Kind, anyway? Sounds interesting. Will you get a chance to go another time?

[Deleted]

www.oneofakindshow.com/toronto/showfeatures.php

There's about 400 totally different/unique (one of a kind:)) artisans.

It's twice a year, Spring & Christmas

[chrisw]

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. Has anyone thought to remove as much fibre from their diet as they can ? Say, for example, starting a diet based on carbohydrates and proteins, and also excluding caffeines like coffee, tea, chocolate, etc.

This is an idea that I would be very wary of. Lack of fibre in the diet is a known cause of colon cancer. Fibre is recommended not just to help with constipation, but also can help to control diarrhea! It simply helps to keep people "regular".

There is much good that can be done with the right diet, however any extremes in diet are likely to be more harmful than beneficial.

[Deleted]

Apr 2, 2011 13:21:19 GMT -5 chrisw said:

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. Has anyone thought to remove as much fibre from their diet as they can ? Say, for example, starting a diet based on carbohydrates and proteins, and also excluding caffeines like coffee, tea, chocolate, etc.

This is an idea that I would be very wary of. Lack of fibre in the diet is a known cause of colon cancer. Fibre is recommended not just to help with constipation, but also can help to control diarrhea! It simply helps to keep people "regular".

There is much good that can be done with the right diet, however any extremes in diet are likely to be more harmful than beneficial.

You're right - I am not reducing the fibre I already eat, just adding rice, bananas, etc. to my everyday food. When I was in the throes(!) I did cut down by having soups etc. but have gone back to my normal diet now.

[Deleted]

Lower intestinal tract (Colon) cancer is the result of the toxins present in digestive waste which sit for extended periods in the intestinal tract, and over a period of years of this regularly happening, those toxins do their damage.

Adding fibre to our daily diets is advised to maintain a stable
amount of water in our digestive tract, yet western diets are too often void of genuine naturally grown vegetable and fruit, and so often based largely on fats, salts, and sugars. Also, western diets are made in corp's factories and have very few natural ingredients. The addition of fibre to ones diet presupposes ones digestive system is operating relatively normally, however, colorectal cancer is the west's leading cancer as our diets are abnormal, no thanks to corporate science.

Also, those on specific medications which severely irritate and over saturate the intestinal tract have a unique circumstance of too much irritation and fluid in their digestive tract.

Ultimately, one needs make the choice of priority....better breathing or daily regular bowels. The second option does not exclude some 'fine-tuning' of how much fibre they allow into their diet, and the ideal is to get both, better breathing and stable, moderate intestinal fluid amounts.

btw helenaudrey : corps soups have 20 times too much salt...

corps is corporation. Corps is a more suitable name, as the majority shareholder billionaires and their executives are akin to sociopaths....they utterly devalue the great majority of all humankind, have no concern for how much they harm their lives, and feel no remorse nor regret for the lives they destroy, sicken, rob, etc.

This post has been edited by Jackie

[Deleted]

btw helenaudrey : corps soups have 20 times too much salt...read labels

what are " corps soup"s> I read all labels and avoid salt like the plague

[zar]

9th day - still running to the bathroom, no nausea. Wouldn't say I was 100% but keeping going (no pun intended)

Just phoned pharmacist to ask if I can take Immodium - "Yes

Strange,Your diarrhea is not caused by an infection etc,but a drug,and your pharmacist says it ok to take imodium.
I had dirrhea at one time (not from daxas)and my doctor went mad when I said I had been taking imodium.She gave me a script
for codeine phosphate.By the way in all the studies I have read about daxas,I dont remember see in anything about where they give medication for the dirrhea,it just had to take is course.That why so many did not carry on in the trial.
----------------------
From these COPD boards I've learned there's a large number of people suffering from severe emphysema and have specific medications regimines which produce a number of side-effects. Though drugs like Daxas do provide important improvements in their breathing, the side effects are so severe as to out weight the benefits, and I'm concerned how those side-effects could be reduced, apart from merely more presciption drugs
--------------------
This one does not cause emetic (diarrhea and vomiting).
www.ncbi.nlm.nih.gov/pubmed/21315169.But it is still in studie,but then again so is daxas.

III/IV,http://tinyurl.com/48h4cc3
www.google.com/search?q=Daxas+REACT

Why did they put on the market then?, and it was passed by the FDA?.Well some drugs do carry on stuidies after they go on the market.
But some have other reasons, why they go

Forest is expected to lose patent protection on Lexapro, the blockbuster antidepressant that is its top-selling drug, in early 2012. It sells Lexapro in conjunction with Danish drugmaker Lundbeck (LUN.CO). uk.reuters.com/article/2009/08/10/nycomed-idUKLA31735920090810
Plus,one of their new drug was refused a licence by the FDA

Sanderson, however, said the prescribing label for Daliresp was better than expected, including no serious "black box" warnings or risk-management programs. The lack of such warnings could pave the way for doctors to prescribe the drug more broadly
www.reuters.com/article/2011/03/01/forest-fda-idUSLDE72019G20110301

Forest is hoping it will help fill a gap once generic versions cut into sales of its blockbuster Lexapro antidepressant in 2012.
www.reuters.com/article/2011/03/01/forest-fda-idUSLDE72019G20110301

It may go public in 2012 at +- 5 billion.

[Deleted]

Apr 3, 2011 9:11:00 GMT -5 zar said:

9th day - still running to the bathroom, no nausea. Wouldn't say I was 100% but keeping going (no pun intended)

Just phoned pharmacist to ask if I can take Immodium - "Yes

Strange,Your diarrhea is not caused by an infection etc,but a drug,and your pharmacist says it ok to take imodium.
I had dirrhea at one time (not from daxas)and my doctor went mad when I said I had been taking imodium.She gave me a script
for codeine phosphate.By the way in all the studies I have read about daxas,I dont remember see in anything about where they give medication for the dirrhea,it just had to take is course.That why so many did not carry on in the trial. ----------------------

Why does it matter? It helped - I only took two Imodium. I'm not going to grow another head

[zar]

Why does it matter? It helped - I only took two Imodium. I'm not going to grow another head

And no more diarrhea,good for you .
Just incase you have to use it again,here is some of the side affects of imodium,so you will know the difference between them and the side affects of daxas.

SIDE EFFECTS: Dizziness, drowsiness, tiredness, or constipation may occur. If any of these effects persist or worsen, contact your doctor promptly.If your doctor has directed you to use this medication, remember that he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.Stop taking this medication and seek immediate medical attention if any of these unlikely but serious side effects occur: severe constipation/nausea/vomiting, stomach/abdominal pain, uncomfortable fullness of the stomach/abdomen.

www.medicinenet.com/loperamidesimethicone-oral/article.htm

[Deleted]

Thank you. I've never taken it before.

[zar]

Here are two questions I would like Nycomed to answer.
1)Why would it not be better for people using Daxas to use inhalers.
2)If this is true?.
Many patients (including the elderly and children) can have problems using inhaler devices and there is a clear preference for oral therapy.
---------------
A strategy to overcome the side effect
and liabilities of oral PDE4 inhibitors has been to deliver the drugs by inhalation. In this report, we identify 1-[[5-(1(S)-aminoethly)-2-[8-methoxy-2-(triflurormethyl)-5-quinolinyl]-4-oxazolyl] carbonyl]-4(R)-[(cyclopropylcarbonyl)amino]-L-proline, ethyl ester xinafoate salt, (COMPOUND 1) as a potent and selective inhibitor of PDE4 with biological and pharmacokinetic properties suitable for delivery by the inhaled route. COMPOUND 1 potently inhibits human PDE4 (IC(50)=70pM) with little or no activity against other PDEs. It is highly potent against PDE4B and PDE4D which are important isoforms of PDE4 controlling inflammation and airway functions. In an allergen-challenged Brown Norway rat model of asthma, COMPOUND 1 inhibited the late phase influx of inflammatory cells and reductions in lung function following its administration by the intratracheal or nose-only routes of administration. Important differences were seen between intratracheal COMPOUND 1 and our previously published results with the oral PDE4 inhibitor roflumilast (Celly et al., 2005), as COMPOUND 1 rapidly (within 1h) reversed the decline in lung function when it was given therapeutically to rats already challenged with antigen. COMPOUND 1 was weakly active by the oral route which is a finding consistent with results showing this compound has poor oral bioavailability in animals. Positive interactions between COMPOUND 1 and albuterol, and COMPOUND 1 and mometasone furoate were seen on the improvement in lung functions in allergen-challenged rats. These results identify COMPOUND 1 as a potent and selective inhibitor of PDE4 with properties suitable for delivery by inhalation. www.ncbi.nlm.nih.gov/pubmed/20621091
------------
Inhaled bronchodilators and glucocorticosteroids (often in combination) form the mainstay of therapy for respiratory diseases, but many patients (including the elderly and children) can have problems using inhaler devices and there is a clear preference for oral therapy

www.ncbi.nlm.nih.gov/pubmed/16916276

[shelley]

I'm seeing some very good sharing of info on this board but for the first time since being a member, I'm also seeing a lot of bickering among some members and downright nasty personal insults IMHO. I have to wonder if it's time to close this subject for awhile and let people chill a little bit. I'm hoping one of our moderators takes a look at things here although I know that things are usually watched quite closely.

We have some fabulous people sharing info here and we have a wealth of information that has been posted after some very careful research within the scientific community. However after reading this page in particular, I feel that too much of the criticism in unconstructive which is not in the nature of this community IMHO.

[ronwtor]

hi members. i have been on daxas for 10 weeks. saw my resp. lastweek did a p.f.t. fev1 increased 21% .my f.v.c. increased 25%.he was so thrilled with results he sent a letter to daxas with my results.saw family docter friday you are moving air greatly . i had to explain to him about daxas he did not no anything .my resp was study docter on trial for daxes

[shelley]

Fabulous Ron! This new med has fab potential and hopefully in time they'll be able to curtail some of the side effects but it does show that there is hope on the horizon for new meds. Any side effects now?

[valerie]

Gosh Ronwtor, so pleased for you and that Daxas has been so positive for you. What I wouldn't give to have an increase of 20% over in my fev1, FANTASTIC, keep it up.

[valerie]

Gosh Ronwtor, so pleased for you and that Daxas has been so positive for you. What I wouldn't give to have an increase of 20% over in my fev1, FANTASTIC, keep it up.

[ronwtor]

hi shelly. no side effects.

[Blossom/Jackie W.]

Consider this an open note and reminder to all posting on this thread......

This topic is too important to too many for it to be closed. Much is "learned" from the "sharing of" experiences...

However; I will caution anyone posting to keep their "attitudes" in check. Verbal abuse of any type will NOT be tolerated.

Thank You,
Jackie

[Deleted]

I sincerely hope you (Shelley) are not referring to me for my little joke, and that's what it was - a joke.

I'm out of here.

[John]

Ron thats good news

[Blossom/Jackie W.]

Good grief Helen . Did we miss something else? All kidding aside, please check your PM's (private messages)

[Deleted]

Oh dear, so sorry. Must be my guilty conscience - or being ultra sensitive (perhaps due to the Daxas

[John]

Here's a for everyone . Breath well my friends & if you wish say a little prayer for each others wellbeing