Trouble Breathing?

[Allisonquast]

Ok so no one has told us why my husband cannot breath - they tested his lungs and they were fine so what causes this? A few stairs and he is pale and breathless.

His wegs was diagnosed via a lung biopsy.

[Dirty Don]

Not sure what you mean by 'testing' his lungs. Any nodules left or early damage may cause breathlessness. The drugs can do it too if not properly dosed. I would suggest that it's the WG...I mean fatigue...it's part of the whole spiel. Also, make sure the lung test was a PFT...cuz other tests may not 'see' the damage done as well.

[pwc51]

Sounds like active WG still - I was quite fit before I was diagnosed but by the time I was diagnosed I could not climb a flight of stairs without getting breathless. A scan showed nodules / scars on the lungs. As soon as I started treatment I started walking again. Initially I walked for 15 mins per day but over the next few weeks I pushed it to an hour a day with hills. The breathlessness was largely gone thank gooodness! One I resumed work full time after 6 months I missed my daily walk and have ended up doing a little at weekends.

[Pete]

Wegs has left me with a bit of exercise-induced asthma. If I overdo, I get wheezy and a bit short of breath.

[annekat]

I also had lung involvement and a lot of breathlessness. Although the progress of the disease in my lungs was stopped by the meds, and healing began, it took a few months for the breathlessness to improve. I feel like my lungs are fine now, and my breathing function tests are not bad, but it may never be as before because of permanent scarring. In addition, there can be breathlessness and coughing indefinitely because of sinus discharge dripping down and collecting in the bronchial tubes and obstructing them, and it can take awhile to cough that up; once I do, the breathing improves immediately. So I would say what your husband is going through is normal and he should notice some dramatic improvement over time. I had trouble climbing stairs, too, but after probably six months of treatment, it became easier, and more and more so with time, until now I can climb them normally. But if I were attempt a really long flight of them.... well, that remains to be seen.

[Debbie C]

I too have lung involvement, in fact I'm going in the a.m. to get a ct of my lungs which they didn't report on last week,so I'll see what's up. I still get breathless also. I was walking the mall the other day and had to stop 3 times to try to catch my breath.
Has your hubby ever had any heart issues ?

[pberggren1]

Could be like me and have scar tissue in the bronchials. Or maybe tracheal stenosis of some kind.

[Allisonquast]

Thanks all. I'm not sure which lung tests he had I just assumed a lung function. We have sons with asthma so I made that assumption.
I guess we will just have to see what happens after this first course of drugs. He was diagnosed within six weeks of symptoms so hoping that there is no lung scarring.

[pberggren1]

When did the onset first begin for Colin? What are his onset symptoms and current symptoms? What meds is he on?

[annekat]

Thanks all. I'm not sure which lung tests he had I just assumed a lung function. We have sons with asthma so I made that assumption.
I guess we will just have to see what happens after this first course of drugs. He was diagnosed within six weeks of symptoms so hoping that there is no lung scarring. Although I had had sinus involvement for a couple years before my dx, I was diagnosed within three months of my lung involvement, and within 6 weeks of my really bad lung symptoms. What scarring I have is pretty minimal, I think, as the doc hasn't bothered with a chest xray or CT scan in a long time. I may always have a bit less lung function than before, but I'm generally able to do moderately strenuous things like yardwork without having to stop and rest much. Your husband being dx'ed when he was is a very good thing and bodes well for him being able to do the things he could do before. Like skiing, if I remember right and haven't mixed you up with someone else!

[Allisonquast]

When did the onset first begin for Colin? What are his onset symptoms and current symptoms? What meds is he on?
He started with sore joint in May this year, bloody cough and bloody nasal issues at the beginning of June and diagnosed June 15th. He's on pred and cyclo plus the ones to help with the side effects.

[Dirty Don]

Sounds familiar...hehe...also sounds like the docs have the drugs right for now. Good starting point. Now, he may have further drugs added, changed, redosed, etc. down the line. Patience now is huge...keep at it, keep doing the right things.

[pberggren1]

It sounds like Colin is stable and should probably be off the ctx by now. The breathing thing could be scar tissue in the bronchials but best to see a lung doc to figure this out with a bronchoscopy. How much pred is he on?

[D.B.]

Ok so no one has told us why my husband cannot breath - they tested his lungs and they were fine so what causes this? A few stairs and he is pale and breathless.

His wegs was diagnosed via a lung biopsy.
hello. learning how to best deal w all the wegs isues is not easy and so.etimes scary like w breathing issues. i dont have lung involvement but my sinuses cause alot of trouble. yesterday assuming it was drippage thst cause severe throat pain so bad it feels like i cant swallow. then i get scared like something will close up and i wont be able to breathe. and fatigue can always be issue unless im in higher doses of prednisone. i used to just fall asleep within minutes of sitting down. my advice would be to be sure to address breathing w dr. and learn to listen to your body so you can be proactive when things start to flare.

[Allisonquast]

Hi Phil, currently on 20 mg dropping 5 mg per three weeks from the initial 60.

A little bit of history on the lung thing.

Had an chest xray in early May when I thought I had stomach problems which was probably Kidney stuff.

In June when the Wegs exploded on my body the internal medicine team pulled the xray from May and compared to one five weeks later and the difference was phenomenal. That is why they are so sure they caught it right away as there was no sign in May. Anyway lung biopsy, battery of tests in the hospital for the three days waiting the results before they would treat it. Wegs confirmed and the three horse dose iv treatments, swelling disappeared and I actually felt great!

If you would have asked me then I would have told you I thought I could go jogging. All of the tests indicated they had caught it early and there was absolutely no sign of anything permanent in lungs, joints or anywhere in my body.

After being home for awhile I noticed that my lungs were not as good as when I left the hospital. I wrote this off to the large horse doses (1000 mg sound right?) given to me in the hospital wearing off.

As Pete says, it appeared exercise induced. I could walk forever on flat ground, but throw even the slightest hill or stairs in there and I was done.

When I mentioned this to my Dr he asked what I was doing, I mentioned cutting the lawn and he looked at me and said "what are you doing that for, you have a serious disease." I guess I needed to be told that.

Anyway three months later nothing was different so I had a lung function test which showed my lung capacity was quite good. The Dr has given me the go ahead to begin trying to exercise my lungs "within reason" which is always important to add when talking to me.

Out of all the side effects this shortness of breath when faced with any load is bothering me the most. I was hoping this was a drug side effect but its not looking that way from most of your experience. It is hard to get as grasp on as some days are better than others.

Exercise is the route I am going to follow (within reason). I will let you know when I am jogging! Alysia and Anne, thanks for the hope on the other post where I am whining about not being able to ski this year.

Colin

[pberggren1]

I hope you can get some answers for this soon Colin. I can understand your frustration. I thin a scope will be the answer.

[Allisonquast]

He'll all I thought I would conclude this thread with an update just in case anyone in the future goes through this and searches the thread. Hubby ended up with a massive pulmonary embolism which was causing his "trouble breathing". He had open heart surgery in January 2014 to deal with it, by that time he was in a life threatening situation. The clots were forming in the lungs and had been building for months. They were not from DVT. Weggies are more susceptible to clotting, 23%!
He may have been spared the drastic situation if he had a ct scan earlier when the symptoms appeared. A lung function test was useless to diagnose.
You need to be your own advocate with this disease! If you are reading this and want more info just private message me.
Yours in health, Allison.

[debhaz22]

Hi Phil,
How do they determine if it is Tracheal Stenosis?
Thx!
Deb H.

[MikeG-2012]

Ok so no one has told us why my husband cannot breath - they tested his lungs and they were fine so what causes this? A few stairs and he is pale and breathless.
His wegs was diagnosed via a lung biopsy.

Good to know, thanks for updating us!

[Debbie C]

My gosh Allison,how scary for the both of you.:w00t: So glad they caught in time ( would have been nicer if they got it sooner though ) Hope he is feeling alot better now. Did the drs. say the embolism was caused by wg ? Keep us posted on how he is doing

[Allisonquast]

Hi deb, yes the clots were from his Wegs! The whole day in emerg and ICU they said no but after surgery the surgeon was sure it was!

[pberggren1]

Hi Phil,
How do they determine if it is Tracheal Stenosis?
Thx!
Deb H.



Usually by looking at the area.

[debhaz22]

Ummm, get that, but by which method?

[pberggren1]

By bronchoscopy and/or laryngoscopy.

[debhaz22]

thanks Phil!

[Debbie C]

Alison is he on any blood thinner now to help pevent clots like baby aspirin or something. Makes me wonder if we all should me on something to pevent them since we have a higher risk. I have to take a baby aspirin since I had a infartic stroke and 5 tia's.Do hope he is getting along better:thumbsup: