Lung involvement ?

[ingemlb]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[ingemlb]

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.