Coughing

[Brooke]

Just wondering if those of you that have that dreaded cough with wegener's, do you have anything that comes up with the cough?
If you are in remissison, did the coughing stop?

[Jack]

I have a dreadful cough that produces lots of sputum, but this is due to me having Bronchiectasis. The docs say that this is not related to Wegener's, but I suspect that it is just another undocumented symptom. It is usually caused by all the infections etc the Wegener's is so good at mimicing and several other members on this site also have it.
The spewtum is a fairly nasty yellow/green/brown colour, but it has been cultured a couple of times and there is nothing in it that requires antibiotics.

[Brooke]

Jack, I used to cough and cough and cough. Sometimes there would be phlegm to cough up and sometimes not. I think the rituxan and steroids helped with that.
It seems I am coughing a bit more now that I am weening off of the steroids however it is mainly at night after I lay down and in the morning when I wake up. I sometimes get a white color of phlegm coughed up and sometimes clear and sometimes green, (seems to change from day to day or week to week). I'm not sure what it is due to. I still have good energy and everything else seems to be fine, just a little more of a cough.
I have had sinus surgery in the past so maybe could be sinus drainage?

[Sangye]

Brooke, you have to tell you doctor about that to be on the safe side.

Last week I was coughing a lot due to several days of air pollution alerts. Just a dry hacking cough, but I couldn't take a deep breath without coughing. Dr Seo said it was due in part to the air pollution, but also happens when you taper pred. He said it might be permanent if I go on lower doses (ie, below 2.25mg) or totally off pred. I don't know if that's because of my history of lung involvement or what-- it was late in the appt and my mind was done taking in more info.

[Jack]

When I first had the cough I suggested to the consultant that it might be sinus drainage and he replied that my sinus problems used to be much worse in the past, but I did not have the problem then. I had to agree with him.
Diagnosis of bronchiectasis was confirmed by bronchoscopy and lung biopsy.

[Sangye]

Brooke, ask them for a sputum culture cup that you can turn in when you produce something greenish. You might have an opportunistic infection.

[Tim Roberts]

Brooke, when I was diagnosed with Wegener's back in August of 2009, my worst symptom was a terrible cough that haunted me for the entire day, every single day. The strange thing, however, was that it quit when I laid down so I could sleep at night. After my diagnosis and being on prednisone, it improved greatly within about 4 days and was gone within a week. When I tapered down and finally went off of prednisone, I noticed the cough a bit as it seems like my throat dries more easily. I also notice that I am much more sensitive to pollutants than I was before but all in all, the cough has not returned. I hope this helps.

[Sangye]

I also notice that I am much more sensitive to pollutants than I was before but all in all, the cough has not returned. I hope this helps.
Aha! That's what Dr Seo said-- that being off pred will make me more sensitive to pollutants. It sure did.

Thanks for triggering my memory, Tim. If I lose anything, I'll be sure to ask for your help. :D

[Brooke]

I have an appt with my pulmonologist coming up and I will let him know.
Thanks :)

[Barbara1966]

Brook
I'm in remission for last 3 months my cough dint stopped completely I still coughing clear sputum couple times a day if that. I do have a day or so without coughing.
I was coughing almost 24 hour a day for six months to the point that my ribs are cracking; only syrup TUSSIONEX provide little relieve but cough start improving slowly when I started oral cytoxon and decreasing prednisone.
Be strong, will get better.

Barb

[elephant]

Barb, what medicines are you on now. I am in medical ( medicine remission) and I take Cellcept, cyclosporine, prednisone 7mg and Bactrim for the WG.

[Barbara1966]

I'm taking 150 mg of cyclophosphamide per day, 5 mg prednisone, sulfameth, omeprazole and calcium. My doctor want me stay on cycloph.. for another 3 months total 9 months.
Barb

[Sangye]

That's a long time for ctx, Barb. Usually they transition you onto a milder drug after 6 months. Did he say why he's keeping you on it that long? Is it a Wegs specialist?

[Jack]

Sounds like a lot of Ctx and not much Pred. Not the usual balance I would say, but if your doc is a specialist it might be what your particular case requires.
Anything more than 6 months on ctx needs a very good reson. You don't want to use up all your lifetime's allowance in one treatment in case you need it again in future.

[DEE]

im taking 150mg ctx and 22,5mg preds and have been on ctx 10mths with various doses of preds started tappering last week to 125mg ctx with22.5 preds
i have a cough but not sure wether due to tapper or still PE related wil know next thurs hopefully
DEE x

[jola57]

I was on cyclo 150 and pred 25 for 6 months the first time and right after 3 weeks after getting off cyclo I flared so badly that my doc put me on 12 months of cyclo and 60 pred. I am now, 2 years later, on 10 mtx and yahoo 5 pred. All seems to be good, just my anca is very high (after 200 they don't measure) so I think I am in remission, whatever that means, although nobody has said that word to me yet.

[Sangye]

Shhhh.... Jolanta is in remission!!! Nobody tell her body. :D

[elephant]

Jolanta sounds like your in remission. I think once we mentally think we are in remission and think positive will stay in remission. Positive thinking goes far.

[Sangye]

I totally agree with you, Elephant. I'm viewing my body as being on a new trajectory now-- healing, recovering, stable. The mind-body connection is extremely powerful.