Breathlessness

[Gwenllian]

Hi
Sorry I haven't posted for ages, been really busy.

As far as I know, for the past few months i've been ANCA negative, but i've been getting so breathless with a dry cough which makes me gasp for breath.

I went to hospital last week, and my CRP and ESR were around 100, but as my oxygen levels were ok, they put it down to a virus.

I'm still feeling really weak, tired, and breathless. I wondered if I had asthma or something, but I don't have a wheeze, and when I try ventolin it seems to irritate my lungs and i have coughing fits.

I give up going to the GP, and rheumatology aren't seeing me until next week.

I wish I could take my own bloods, and look at the resuts myself. I don't trust anyone else!!!

[Jack]

After a few months of problems, I think you should be asking for a referral to a lung specialist.
After many years in remission, I developed a cough which turned out to be Bronchiectasis. Oh joy! I went through quite a few different inhalers before finding a couple that had any effect at all. It is now one of my more serious problems and I wish I had been able to catch it earlier.

[Gwenllian]

Thank you for your reply. Whenever I see a doctor, the listen to my lungs and tell me it sounds clear...but why do I struggle so much then? My tracheal stenosis is fine at the moment, so i know it's not that.

Will keep you updated...thanks

[crackers]

hi gwenllian.
in september of last year i had surgery,not wg related.before that i was feeling pretty good wg wise.since the op i have experienced the same symptoms as yourself.as with you lungs are clear CRP, was 30 which is up a little but not much.my rheumy has referred me to cardio and respiritary for further investigation.will keep you posted.
john

[Sangye]

Gwenllian, when my lungs were full of hemorrhaging blood, and even when they were full of blood clots, they always sounded clear. I couldn't breathe and my docs then told me (of course!!) I was crazy. Also, my oxygen levels always measured fine, but I was clearly cyanotic. Each time it persisted, they'd finally order a chest CT and discover what was really wrong.

When's the last time you had a chest CT? Your inflammatory markers are high--that's not a virus. The ANCA is not necessarily a reliable predictor. You could be flaring. I hope you see your rheumy quickly this week.

[Jack]

I'll just add my name to the clear sounding lungs list!

I have a lung infection at the moment (coughing up lots of green stuff! Yuk!), but my lungs sounded clear when I went to my GP for a different antibiotic. Luckily, he always believes what I tell him.

[Carol]

My friend has WG and every 12 months she goes into hospital to have her lungs done - from waht she tells me they stretch her airways to open up the scar tissue that developed. I'm not real sure of the procedure but that is how she explains it. Hope this helps.

[Sangye]

Ooh. Sounds like having a face lift from the inside out.