Lung involvement ?

[annekat]

Yes, I should try it again even though there's less phlegm, if what there is was thinner, it wouldn't get stuck in my bronchii so much. I have to do too much coughing for a small amount of stuff.

I think there used to be "expectorant" cough syrup that was just guaifenesin with nothing else added.. I'm going to look for that on the theory that the liquid may work better and faster, as I read somewhere that it does.

Also, people taking guaifenesin are often told to drink lots of water to make it more effective, and I think it says it on the Mucinex label.

The smaller dose generic pills were a lot cheaper, but I had to remember to take them more often to get the same effect. And of course, I didn't remember. So that is a definite advantage to taking the brand name Mucinex in the 1200mg. time release formula. Just once i the morning and once at night.

[windchime]

[QUOTE=annekat;80546]

I think there used to be "expectorant" cough syrup that was just guaifenesin with nothing else added.. I'm going to look for that on the theory that the liquid may work better and faster, as I read somewhere that it does.[QUOTE]

I think the syrup is every 4-6 hours and it's the DM ( I think). Me, I need my meds only twice a day or I forget.

[annekat]

[QUOTE=windchime;80547][QUOTE=annekat;80546]

I think there used to be "expectorant" cough syrup that was just guaifenesin with nothing else added.. I'm going to look for that on the theory that the liquid may work better and faster, as I read somewhere that it does.

I think the syrup is every 4-6 hours and it's the DM ( I think). Me, I need my meds only twice a day or I forget.

DM is something to avoid. It means it has the cough suppressant dextromethorphan added to the expectorant, guaifenesin. It seems to be the norm these days to combine the two in cough syrups. What I was saying is that at one time, when I was a lot younger, it was possible to get the guaifenesin syrup by itself to use as an expectorant. I haven't given up on thinking that it might still be available somewhere. Not just anywhere.

Taking the DM every 4-6 hours for longer than a day or two, or for more than a few days at all, is not a good idea. It has a rebound effect and while it suppresses coughs initially, it eventually makes them worse. I have found this out from personal experience and also read about it. The label says not to take it for more than 6 days. When I use the DM it is only because I'm desperate to keep from coughing while trying to fall asleep, and I only take it once, at bedtime. I don't think we need to blindly follow the labels on these things, we need to figure out how to use them to our advantage without over-using them. Plain Mucinex, or guaifenesin, however, appears to be much safer and doesn't come with these warnings or problems. That is is why I'd like to find a liquid expectorant that only contains guaifenesin, and I don't mind spending some time looking for it. Will let you know if I find one.

[annekat]

Here is a syrup that just contains guaifenesin and some other herbs. No DM.

Herbal Expectorant Syrup (cherry Flavor) 4.2 oz by Naturade

This is what I was looking for and there are others available on a search for guaifenesin syrup. There is nothing wrong with taking regular Mucinex pills, 1200mg, time release, twice a day. It is good medicine. I just like knowing that there is a syrup available that does not contain DM, in case I want to try it. Now to look at my local pharmacies and see if they have it.

[ingemlb]

No more coughing up blood!!! I have now been thoroughly rinsing out my sinus' 2x a day with several bottles of the saline solution. Since then my cough has reduced and during the night only very few coughing attacks. Then since last night the stuff I am coughing up no longer has blood included. It is mainly clear sometimes yellow which resembles what I blow out of my nose.

So my thinking now is ... The initial dark brown blood I coughed up every day for over a week in the hospital was due to one massive nosebleed during one night which ran down the back of my throat (post nasal drip) into the lungs. The first time I coughed it was bright red blood. After that it was always this more brownish gunk so I think it was all still old blood from that initial bleed. Then the Respiratory specialist syphoned out the rest of the muck and for 2 days I had peace. Then when it started again it was fresh blood, mixed with clear mucous making it a light red almost pink colour. I now think that lot came from al the tissues she extracted out of the lungs during the biopsy. I know she took quite a bit because she wanted to find if there was any Wegener's involvement.

Anyway that's one theory. The other one being that the 40 mg of Prednisolone is healing whatever was bleeding and hence it has stopped. The volume has gone down due to the regular rinses. So for now I am happy!!!

[BookNut]

I have had a cough just like you describe. as you may know from one of my posts you responded to a few days ago, I have had the cough, rhonchorous wheeze and constant post nasal drip for three years. At a suggestion i read here, I tried putting my steroid inhalation solution ( budesonide) into my regular Neilmed sinus rinse, instead of using a nebulizer to breathe it into my lungs.. It has turned off the drip like i had fixed a leaky faucet. After a week, the wheeze I had for three years is almost gone, and the coughing has been cut at least in half. i do no have wegeners. So, coughing and wheezing CAN definitely be caused by sinus and post-nasal drip alone.

[annekat]

From the small bit of research I just did, budesonide appears to be a pretty expensive drug. If one already has a nebulizer and is covered for the drug to go in it, Jacquie's suggestion could be tried. I saw the drug available in pill or capsule form on my drug plan formulary and it was Tier 5 with limited availability. They didn't even give the price but said I'd pay 33%. But that would not be the ideal form for adding it to the rinse, anyway. Maybe there's more that I don't know about what form it comes in for a nebulizer or how to get it prescribed with or without the nebulizer. A reasonably priced steroid inhaler is fluticasone propionate, generic for Flonase. It's normally inhaled into the nose, but it would be interesting to try adding a few drops to the nasal rinse. I used to use it but didn't try it that way. My doc wanted me to stop steroid inhalers at onset of WG treatment because I was already getting enough steroids in the pred, in his opinion. I'll bet i could get another doc to prescribe them, though. Right now I'm not having severe issues with post nasal drip or nasal discharge, or maybe everything is dried up in there and not flowing. I don't really think that is the case... there just doesn't seem to be much in there right now, though there is a bit of pressure that could be due to seasonal allergies.

[BookNut]

It IS expensive. My script is for twice a day. Back when I was first prescribed it, my body immediately recognized it as doing a better job then the albuterol which is more commonly prescribed for asthma. probably because budesonide is a steroid. I dropped both of them because neither seemed to be doing the trick, and symbicort was a bit better. I have looked into the pricing and walmart charges half as much as CVS, so I plan to switch. Now that I use it in my nasal rinse, I find that once a day is enough. Medicare covers 80%, which means I pay $106 for a 120 vials. At walmart, it will cost me only $53. obviously if I were taking it as first directed, it would be pricier because 120 vials would only last me 60 days. But even if I have to up it to twice a day, the relief is SO worth it. I have been on a prednisone taper 5 times since June. I get better, but go down hill again a week or so after the taper ends. I am hoping to avoid all that with the nasal treatment. my first pulmonologist was correct when he jokingly said "don't take this the wrong way, but the problem is all in your head"....meaning my sinuses. All the inhalations going into my lungs ended up being pretty useless, since the problem was originating in my sinuses.I am also interested in Mike's suggestion of inhaling antibiotics in the rinse. If I come down with an infection again, I plan to try that.

[annekat]

I have used the albulterol and one of common steroid inhalers, Flovent. When using the Flovent regularly, it practically eliminated the need for the albuterol. Plus the albuterol can be harsh and doesn't work as well after using it too regularly. Of course, with Wegs, like you with your syndrome, it became apparent that neither was going to do much good in the long run because the problem was more in my sinuses than in my lungs or bronchial tubes. I did have Wegs in my lungs, which was scary, but treated in time to be a relatively brief involvement. The sinus and ear issues have been a lot more pervasive over time, which I think is common.

[ingemlb]

I The sinus and ear issues have been a lot more pervasive over time, which I think is common.

For me too. I had massive sinus headaches most of last year (pre-diagnosis) and in October had extensive sinus surgery which was supposed to fix it all. It didn't stop the mucous. In January I went back to the ENT specialist and he via camera showed me what a great job he had done removing the diseased tissue, removing polyps, widening passages etc but also showed me 2 new channels of inflammation. Well those channels are quite productive and seem to be running more and more despite the nasal rinses. The increase in Prednisolone hasn't helped either so not sure what would help. I will give it a bit longer before going back for more checkups and advise. Thanks for sharing all your experiences. I will see what my specialists have to say