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ingemlb
02-21-2014, 02:57 PM
Hi All. I am just curious if someone may have experience to compare. Many years ago (2002-2007) I had a very productive asthmatic like cough that had me coughing around the clock in fact people at work would know I was in the building due to my cough. My then Family Doctor just told me it was a chronic cough and chronic bronchitis and it and wasn't going to go away and I had to learn to live with it. I had been working for 2 years in Malaysia where I developed the cough. At first others seemed to be coughing too and I was told it was probably the 90 day Chinese Cough and so I never went to have it checked out then. It was quite asthmatic and on my return to Australia I told the doctor I was scared to sleep at night and needed 5 pillows to make sure I didn't drown in the mucous and then I also mentioned that sometimes I coughed so hard I couldn't breathe so he gave me all kinds of cough medicines and asthma inhalers but never suggested it be checked up further.
Next late in 2003 I arrived in Germany on a holiday with very nasty flue like symptoms then ended up coughing up blood and it was diagnosed as a bronchial obstruction and pleurisy and pneumonia. I was put on very strong antibiotics and the weird thing I noticed for the first time in 2 years the cough stopped. However when the course of antibiotics was done with it resumed as previous. i changed doctors and this time I was found to have some bacteria called Rickettsia which are very difficult to get rid of with normal antibiotics so I was put on pulsed antibiotic treatment for 3 years. During this treatment the cough was very mild and I could live with it.
By the end of 2006 I had had so many acute infections requiring hospitalisation interspersed with bowel obstructions also putting me in hospital that my doctor ran some tests and decided my immune system was in trouble. I started a trial protocol which stimulates the immune system to fight all these intracellular bacteria but it takes a very long time. However whilst on this treatment the cough stopped. Other thing started from 2009 but I covered that elsewhere. The other symptom that began to flare up badly was sinusitis (from 2001) and last year the sinusitis was so bad I ended up undergoing sinus surgery. At the time I asked the specialist if it was possible the sinusitis could have caused the cough because I had quite severe post nasal drip. He said it was possible so I figured maybe that explained it all.
OK bring the clock forward.... to 2014
January 20th I stopped the immune-stumilative treatment
January 21st I was admitted to hospital with severe vasculitis
many tests were done including chest scan and X-rays, lung functions test and all came back normal giving my lungs a tick as healthy
January 28th I was started on 20 mg Pred
January 30th this was increased to 30 mg Pred
February 12th (last week wednesday) I was diagnosed with Wegener's
February 12th Pred was dropped to 20 mg and Methotextrate 10 mg added once a week.
February 14th pain returned in my joints and some new pain
February 16th Pred increased to 25 mg but little effect
at some stage that week I had a very bloody nasal discharge and shortly after I lay down I ended up coughing big blob of blood
however both I and the doctor assumed it was from the nose via post nasal drip
February 19th Pred increased to 30 mg
February 20th I started coughing up more blood stained mucous this time more of it but again often after lying down. I asked for
a sputum sample bottle and we sent some off to the lab but no results as yet
This time I was more concerned because all the mucous from the Sinus area was mainly yellow or scabby but not really any
amounts of blood so the colour of the two no longer was the same and the volume being coughed up is on the increase
also the coughing fits kept waking me up
February 21st (today) I woke up with a coughing fit and coughed up quite a large amount of dark red mucous. Nothing much was
coming from the nose. Also the chest was bit sore but that could be from all coughing.
I showed to the next doctor who turned up and he has asked a Respiratory Specialist to come examine me and the lab has asked for 2
more samples which I have supplied.
This time the coughing is not easing when sitting and each time I cough up comes the same colour phlegm.

So my questions are
1) if the lung was totally healthy as per scans and lung function tests could it have deteriorated so quickly to now be producing
this bloody mucous?
2) Even though everything coming out of my nose is either yellow, clear, yellow scabby or some tiny dried up blood more black than
red scabs could there be something hidden away at the back of the sinus' which chooses not to come out of the nose but instead
runs straight down my throat?
3) Can post nasal drip caused large volumes of phlegm in the bronchials

So ... that's about it. Sorry for the long story but i figured if anyone else is in a similar situation the details might help?

Of course I am getting rather nervous now because I am yet to see the Respiratory specialist and supposed to be discharged tomorrow. The test results from the lab are unlikely to return prior to discharge so I guess I will have to chase them up from home.
I would hate for this to delay discharge however ... even worse would be the situation that there is something happening in the lungs that needs more urgent attention :( Inge.

annekat
02-21-2014, 03:25 PM
All I can tell you is that after 2.5 years of sinus and ear issues, and no lung issues at all, lung problems started and escalated quite quickly over a period of a couple of months, which led to my WG diagnosis. I was coughing up some blood which undoubtedly came from my lungs, though it wasn't a huge amount. Coughing up large amounts of bright red blood is definitely a concern. I know others here can report more extreme cases of this at the height of their initial flares. I can only hope that the blood you are coughing up is actually coming from your sinuses. That could be the case if a nosebleed occurred, for example. And I have found that very heavy coughing can actually cause a nosebleed by jarring the nasal lining. So maybe that could be what happened, and could explain why it happened so quickly. Best of luck.

ingemlb
02-21-2014, 04:04 PM
thanks very much Anne. That's rather scary :( I just saw the Respiratory Specialist and she said she would feel remiss not doing an examination of the airways and a biopsy of any inflamed tissue she may find. She said the lung scans don't always show up all the airways passages. So looks like I was celebrating a bit early :( Anyway it's much easier having all these tests done from here than going home and making appointments. Also more relaxing as I can simply rest in the bed in-between examinations and doctor's visits. I have survived this long I guess a few more days won't kill me. After reading your post I am glad I agreed to go along with it. Amazing that this disease can progress so rapidly.

annekat
02-21-2014, 11:44 PM
Well, I'm sorry to scare you, and should have said that the coughing up of blood didn't happen until after at least a month of coughing and breathing problems that were in tandem with lots of sinus discharge. My CT scan clearly showed cavitary lesions in my lungs. I don't remember hearing about the connected airways being affected. In any case, it is good they are going to check everything out while you are still there. Wegs is such a capricious disease, and we never know what it might do next, or how fast. If the extreme blood coughing was an isolated incident, it could have been a nosebleed, as I suggested. That has happened to me.

ingemlb
02-22-2014, 12:06 AM
Well better to be scared into action in this case than be complacent. As to nosebleeds. I never had a nosebleed unless you count the copious amount of blood after sinus surgery in October. I get blood colored mucous on clearing my nose and had a bit of bleeding after the biopsy. Also sometimes have blood encrusted scabs and early this week on waking I blew out of one nostril a huge crusty mucous followed by a fair amount of red blood. Then I lay down and shortly afterwards cough ed up blood. This is what made the doctor and I assume post nasal drip and not investigate further. Then last 2 days it changed. The sinus discharge was more yellow crusted scabs and what I have been coughing up is dark brown obviously blood stained mucous not resembling the sinus discharge. Then today this became more severe and I find myself being able to cough it up on demand almost. Also as soon as I try to sleep i end up coughing and spluttering reminding me of the years of this horrible choking cough I had from 2002. Yesterday the stuff I coughed up cleared during the day. Today the colour has remained consistent.
So unless there is a bleed deep inside the sinus cavity which never runs out if the nose but always runs down the back of the throat I can't really blame nosebleeds. Mind you I am still hoping this is all post nasal drip :(

windchime
02-22-2014, 12:34 AM
Hi Inge

Many years ago I had a really hard cough for several hours. It produced blood which scared me and sent me to the ER. They told me the hard coughing irritated the bronchials causing the blood. It wasn't the copious amounts of blood that you are talking about, but maybe this is a partial explanation. Post nasal drip can certainly cause a cough. I have that a lot since I'm a mucous producing machine. It is always better to get it checked out and I'm glad you're being proactive and taking care of it. Yay you!!!!

PS Like your new pic.

annekat
02-22-2014, 04:38 AM
Me, too, on the new pic. I guess I was thinking any uncharacteristic blood from the nose could be considered a nosebleed, whether it went out the front of the nose or down the throat. But then, I don't mean the typical blobs of blood mixed with mucous that are often sort of hanging out in there for those of us with sinus involvement. But more, any disturbance which would cause a break anywhere in the membrane, and this could include hard crusts. So, I guess I, too, was trying to hope this was post nasal drip for you and not a lung thing. Now that I understand that is still happening, a lot of the time, and is very distinct from the nasal discharge, I certainly share your concern, and am glad you are still in the hospital where it can be easily investigated instead of you having to make decisions about it from home.

If this is a new lung involvement, I can offer the encouragement that mine was cleared up quite fast with the proper medications. In my case, it was 125mg/day of cyclophosphamide (CTX, Cytoxan) and 60mg. pred to start. The lung stuff hasn't come back, although the sinus stuff drags on, which is typical, although it is a lot better. I don't know what regimen of meds they were planning to send you home on, but I imagine this could change that.

I know this must be a difficult day for you. We are looking forward to hearing how this turns out.

ingemlb
02-26-2014, 07:23 AM
I think this discussion wandered to the exercise thread so I figured I better update here in case others are reading it.
The Bronchioscopy was done on Monday and the Specialist told me the lungs and airways appeared very clean and she found no evidence of Wegener's involvement. However she said that doesn't totally mean you can rule it out because the disease can be sneaky and hide in tiny areas not that visible. She did find a lot of blood stained mucous but no idea where it came from. She syphoned a lot of it out (was great because the coughing was quite reduced until last night). She also biopsied and sent the muck to the lab.
So yesterday the initial biopsy results showed "no wegener's" once again "unspecific inflammation" and they are still waiting if any cultures grow anything.
So it's back to suspecting the sinus. As the blood wasn't "bright red" but more dark brown mixed with Phlegm most to the time ( and since the biopsy it has changed to yellow muck) I am assuming and the Specialist agrees, that I had a massive bleed into the lungs during sleep one night. Because this mad coughing up blood started during the night. And that all the subsequent days I have been coughing up what was left of it bit by bit. It had new yellow mucous added because the sinus are dripping away into the back of the throat and each time I lie too low up it all comes. I guess coughing it up is in that case a good thing as it's not so good having the lungs full of gunk. It was affecting my breathing. Now the noisy breathing and gurgling sound has stopped as well. Probably due to the syphoning done via the scope the other day.
I guess I need to keep an eye on the lungs in the future. Once I am discharged from here I will get referrals to all the various specialists who are responsible for all the bits of me that are engaged and will see them maybe once or twice a year to check on the organ status. Like I need someone to keep an eye on bowels, on stomach ulcer. The Gastroenterologist told me last night that she also does colonoscopies so I may instead of going to my usual surgeon swap over to her (trying to reduce the number of specialists involved) and she can monitor both the stomach and the bowels. I will very soon visit my Opthalmologist as I am continuing to get badly inflamed eyes. Today woke up with a bright red left eye where over the previous weeks it's been the right eye mainly showing inflammation. Then down the track I will have to see the ENT specialist who now knows I am diagnosed with Wegener's so he can monitor the sinus' and maybe do further biopsies. My big issue is every single biopsy result has come back "unspecific inflammation". I also need to decide if I am to stay with my current GP or get one closer to home as it appears there is no way out of it without engaging also a GP and even though I absolutely love my GP we have been clashing a lot recently as he has his own theories as to treatment and I need someone who is willing to work together with the Rheumatologists. then of course there is the Endocrinologist keeping an eye on the Diabetes and I may have to re-establish contact with the Neurologist as my feet are constantly having pins and needles nowadays on top of the numbness I have had since 2005.
So what I have been told is - regular visits to the Rheumatologists and he will call on the other's as needed but I think I may be a bit more pro-active and get the others to check out the organs once I have been on the treatment for a few months.
I am sitting here waiting for the Rheumatologist to turn up to do the discharge process and write up all the scripts, referrals, letters back to old and new specialists and GP and give me referrals for ongoing blood tests and also explain how I contact them post discharge and when I rock up for my first appointment.
The referral issue is quite tricky here. A specialist can only do a 3 months referral to another specialist whereas a GP can write up an indefinite referral. So I will be covered for a couple of months after leaving the hospital with all the referrals already done here however after that I need fresh ones and as I know already several areas are involved and need checking I may as well get indefinite referrals to all of those involved.
I am lucky in that all these specialists that were engaged by the hospital know about Wegener's and were a part of the diagnosis process so at least I won't be having to worry they will try to diagnose me with other stuff and I know for a fact that they have come across Wegener's before, maybe not regularly but are at least aware.
I am very glad I ended up here. I think it has made things very simple going forward because everyone is on the same page, they all communicate with each other and know each other and every one apart from my ENT specialist is also a consultant at this hospital. This hospital doesn't have an ENT consultant. Maybe I should suggest my own ENT consultant tries to consult here too lol he works for another hospital that is associated with this one just around the corner.
We have a friend who is an infectious diseases specialist and lives just up the road from us. I asked him to recommend a GP who is close to us and he came back with a name last night so I think I will make an appointment as soon as I get home to establish a relationship with this GP and use my existing GP only for things I know he is good at dealing with. Unless of course he changes his mind and is happy to go along with the treatment decided. He is extremely caring and does a lot of research himself but lately has been a bit blinkered in one direction and so it's been very frustrating for me.
It sure has helped getting all your feedback here. By the time I see any doctor I know exactly what to ask :) so thank you each and everyone one here for your support. I have not done much of this myself as I feel right now I don't have the experience to help out others but I hope in time I can be supportive as well.
Inge :)

annekat
02-26-2014, 07:43 AM
Thanks for the update, Inge, and I'm so glad there doesn't appear to be any alarming new development and you are on the road to being discharged and going home. :thumbup:

ingemlb
02-28-2014, 11:46 PM
Sadly the blood stained mucous has returned and I do a huge amount of coughing during the night. This time it's not a yucky brown more like a lighter shade of red probably more like fresh blood mixed with ordinary phlegm. Today I finally did a very thorough sinus rinse but nothing looking like blood came out of the nose at all. So I am still baffled.
My plan is to wait a few days and see if the Prednisolone will stop it. If not I am thinking maybe to return to the ENT specialist and get him to take a close look inside to see if he can find any areas that are bleeding. If that doesn't reveal the source I guess I need to go back to the Respiratory Specialist as it must then be coming from the lungs. Still waiting on results from the biopsy if anything was growing in the mucous. Bit of a rigmarole getting the results now I am out of the hospital.
On Wednesday took my 3rd dose of Methotrexate so I guess it will be another few weeks before that kicks in.

annekat
03-01-2014, 04:24 AM
Sorry to hear you are still having that problem with coughing up blood and not knowing for sure where it is coming from. My suspicion is that it is coming from somewhere in the sinuses or nasal cavity. That doesn't mean it is a good or acceptable thing, but I think it is not all that unusual. Of course, on my part, it is only a wild guess and just shows how much I want it not to be a sign of lung or bronchial involvement!

After almost 3 years since dx and beginning treatment, I still do a fair amount of coughing, which sometimes contains blood, and I'm pretty sure it all comes from the sinuses and gets lodged in my bronchial tubes. Just the other day, I coughed so hard that it shook EVERYTHING up, and not only did I throw up, but I had a nosebleed at the same time. Since then, there is a little blood it what I cough up,
When I blew my nose right after the nosebleed, some bloody clots came out, which are not a good sign. I will mention those to the doc. But overall, I don't feel like I'm having a flare and feel a lot better than I did the last time I had one. I'm still on a therapeutic dose of MTX and am tapering the pred, currently at 7mg. No more bloody clots from the nose lately.

ingemlb
03-01-2014, 08:01 AM
Thanks Anne that's my hope too that it is coming from the Sinus. Rather not have the lung involved as well. Trouble is for over 2 weeks have not had any bleeding or even old blood coming out of the sinus area :( which makes me nervous. These severe coughs are very hard on the body. For me they wreck my bladder and make me stress incontinent which is another very unpleasant thing to deal with. The entire body shakes so I can understand that when you have areas in the body that are already under stress these coughs can make them bleed. So probably your coughing caused something in the sinus to rupture :(
Yesterday I took 3 bottles of the saline water and flushed the nose out in the early evening. After that I was breathing better. Then I did it again but only 1 bottle before going to bed. Last night my coughing was reduced so even if the blood is NOT coming from the Sinus area I am sure there is constant post nasal drip into the lungs causing the coughing. I have had this on and off since 2002. From 2002 to 2007 it was unbearable and then I started a new treatment which was antibiotic based and that stopped the cough for several years but it meant staying on antibiotics (pulsed low dose) and when taking a break the cough would flare up again. It was only last year that I linked the cough with the sinus situation because as the sinus' got really bad last year so did the cough. So I did some research and found out Post Nasal drip can cause chronic coughs which no doctor had ever mentioned to me. I finally saw an ENT specialist who did a scan and looked inside the nose and said it was severely diseased sinus tissue that had to come out and when he operated in October he also found polyps and widened some passages. That stopped the never ending headache. However as I was not allowed steroids the healing was slow, the bleeding profuse and then the phlegm never went away. When he rechecked in January after I was admitted to hospital he showed me how nice and clean the passages were and then pointed out 2 new channels of inflammation. He biopsied those but found only "unspecific inflammation" no granulomas no evidence of Wegeners. I think after the operation all he biopsied were the polyps he removed. Had he sent all the junk to the lab maybe they would have found something :( Anyway his thoughts were that only once a year does he have patients for whom the sinus operation doesn't fix it and they usually turn out to have Wegener's. But for me ... no biopsy has yet found any tissue confirming it :( The only conclusive results are the blood markers. In hospital they also did a gastroscopy and showed me photos of the ulcers and again biopsied then. "Unspecific inflammation" no granulomas no helicobacter no idea what caused the ulcers or the bowel inflammations. My Gastroenterologist simply said it's all connected to the Wegener's. But weird that this disease is causing obvious damage but leaving no trace of itself other than the blood tests results :(

annekat
03-01-2014, 10:45 AM
You have been battling this stuff a long time, Inge, and without an official dx!

There is actually a lot less coming out of my sinuses than there used to be. Things seem to be sort of drying up in there. But I do find out when doing multiple sinus rinses, there is more in there than I thought. You are right, these heavy coughs can shake your whole body to the core and loosen up all kinds of things. When I do cough something up, it usually isn't much at all. I feel there is some dryness, irritation, and possibly scar tissue in the throat and bronchial tubes, just from all the coughing I've done in the last 3 years. I know there are throat sprays and such that can help stop the "tickle" that starts a coughing spell. I also know that I have a lot more problem with this in the colder winter weather, whether it be cold and dry or cold and damp, and that it will get better as it warms up.

ingemlb
03-01-2014, 11:11 AM
In my case it's never been a dry cough or tickle. It's a cough caused by excessive phlegm and I splutter and bring it all up. It was extremely embarrassing when I was still working as I used to do a lot of training and lectures. I always had tonnes of cough lollies with me and was usually sucking on one all day. So you can imagine when the cough went away during the treatment I was overjoyed! It was enough to convince me the treatment was worthwhile. The other thing that stopped was frequent acute infections which used to land me in hospital on intravenous antibiotics and the frequent bowel obstructions which also put me in hospital for a week on a drip. At first it was thought they were caused by adhesions, then IBS. However have not had one that hospitalised me in the last 7 years hence I was convinced the autoimmune disease treatment was fixing me up and ignored the new symptoms for far too long :(

annekat
03-01-2014, 11:25 AM
Oh, I've had plenty of the more productive coughs when I was a lot sicker.At least then I knew there was a point to the coughing, to get that stuff up and out of there. I don't consider myself in remission, and there is still stuff to cough up, but it's just not very much. Yet the coughing persists and can be severe enough to really shake things up. Not that it happens all day, but when it starts it can be hard to stop. Temperature changes seem to trigger it, as can eating something or talking to someone. And it does get worse toward the end of the day when I'm tired. The good part is it doesn't usually keep me awake at night. Once I'm asleep, the impulse to cough really settles down.

I know you have more complications than I do and am aware I could have more in the future. I'll take your cue and try not to ignore new symptoms!

ingemlb
03-01-2014, 12:28 PM
You are right. Any stress on the voice triggers it. Talking usually sets it off. I think the trouble with the sleeping is that even elevated on several cushions that post nasal drip keeps running down my throat and the choking sensation wakes me up and make me cough i tall up :( Yes I think we need to keep on top of new symptoms. I certainly learnt my lesson :(

windchime
03-01-2014, 12:55 PM
I found that if the phlegm is real thick it causes more problems than if it thinner. So when I get the gaggy feeling because it's thick I take Mucinex which helps a lot. It thins the mucous and helps to keep me from gagging on it. It's still there though just more tolerable. Used with the sinus rinses it helps even more. Just a thought.

ingemlb
03-01-2014, 02:55 PM
I was given this stuff from the Respiratory Specialist to break up the phlegm and I found when I took it I coughed even more. Yes it was nice and runny but it still wanted to come out :( Also the bottle said don't take if you are prone to stomach ulcers (what do you do if you already have them?) and it was high in glucose and sucrose. So in the end I stopped taking it. I will check out Mucinex and see if it is available here. Thanks Cindy.

annekat
03-01-2014, 04:06 PM
I used to take Mucinex and it helped... I gradually stopped, guess I thought I needed it less, but might give it another shot. Another mucus thinner that's been discussed on this forum lately is NAC, or N-Acetyl Cysteine, an amino acid. I tried it briefly when someone gave me a few pills but may not have taken enough and given it enough chance.

What Mucinex actually is is guaifenesin, a natural product made from a tree bark. You can get generic versions of it for less. I took the time release version of 1200mg twice a day. Later I got generic pills that weren't available in time release. If you buy it, especially the brand name, be very careful to get the one with just guaifenesin in it and not dextromethorphan or pseudoephedrine, unless you want those things. Read the label carefully. I would like to find liquid guaifenesin, as I think it might work faster and better. It is available as an expectorant in cough syrups but usually in combination with dextromethorphan, which is not good to take for more than few days.

windchime
03-01-2014, 11:58 PM
I used to take Mucinex and it helped... I gradually stopped, guess I thought I needed it less, but might give it another shot. Another mucus thinner that's been discussed on this forum lately is NAC, or N-Acetyl Cysteine, an amino acid. I tried it briefly when someone gave me a few pills but may not have taken enough and given it enough chance.

What Mucinex actually is is guaifenesin, a natural product made from a tree bark. You can get generic versions of it for less. I took the time release version of 1200mg twice a day. Later I got generic pills that weren't available in time release. If you buy it, especially the brand name, be very careful to get the one with just guaifenesin in it and not dextromethorphan or pseudoephedrine, unless you want those things. Read the label carefully. I would like to find liquid guaifenesin, as I think it might work faster and better. It is available as an expectorant in cough syrups but usually in combination with dextromethorphan, which is not good to take for more than few days.

I took the 1200 mg of just the guaifenesin also and have finally been able to stop it as the mucous has slowed down. I agree with you Anne make sure you get the one with only guaifenesin in it. I found that I got no relief from the lower doses so if they are tried and don't work you may just have to up the dose. It was the best thing I found when I was choking on the thick phlegm.

annekat
03-02-2014, 02:33 AM
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
03-02-2014, 04:43 AM
[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
03-02-2014, 01:30 PM
[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. 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
03-02-2014, 01:41 PM
Here is a syrup that just contains guaifenesin and some other herbs. No DM.

Herbal Expectorant Syrup (cherry Flavor) 4.2 oz by Naturade (http://www.pureformulas.com/herbal-expectorant-cough-syrup-4-oz-by-naturade.html?CUSTOMTRACKING=CUSTOMTRACKING&CAWELAID=530005240000335529&catargetid=530005240000712743&cadevice=c&cagpspn=pla&gclid=CNnww6vo8rwCFdeUfgodTgkAdQ#sthash.uVliShlk.d pbs)

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
03-02-2014, 02:10 PM
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
03-04-2014, 03:19 PM
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
03-04-2014, 03:51 PM
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
03-04-2014, 05:25 PM
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
03-04-2014, 06:48 PM
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
03-04-2014, 07:48 PM
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 :(

windchime
03-05-2014, 12:13 AM
I found that over time most of the nasal sprays didn't work any longer. The best one so far is Dymista which is a steroid and and antihistamine. I recently learned that nasal sprays should be sprayed a certain way. If you are tasting it or it's going down your throat you aren't spraying it correctly. That was me. Unfortunately Dymista was removed from my formulary so I need special dispensation to get it. Which I'm sure I could get, but I was already paying $35 for it and I'm sure the price increased with it being removed from the formulary. Oh well thought I'd share the info.

BookNut
03-05-2014, 05:01 AM
[QUOTE=annekat;80689 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.
.[/QUOTE]

I have been taking the flonase for at least 2 years, without any noticeable improvement. It is one of the drugs i plan to ask my doctors if they think it would be ok to discontinue. But it might work for some. i would think that diluting it in a nasal rinse would also dilute its effectiveness. But who knows. If we were all identical widgets, there would be only one treatment for every ailment. that is what is so great about this forum. You get to read about all sorts of treatments and it gives you second hand access to the opinions of all the doctors who are treating all the members. sharing information is a great thing!!