Aspergillosis?

[shazza09]

Hi I have had wg for over ten years with different symptoms. I have ad a persistent cough for approx two years despite having two rituximab infusions. This has now been diagnosed as apergillosis has anyone else suffered this and what was the treatment?

[John_Mills Volunteer]

Aspergillosis usually only affects people with existing health conditions. Most healthy people have natural immunity to the aspergillus mould.

Aspergillosis is the name of a range of infections caused by a fungal mould called aspergillus. It usually affects the lungs, but it can spread to almost anywhere in the body. Allergic bronchopulmonary aspergillosis (ABPA) is usually treated with steroid medications to prevent an allergic response and in some cases surgery maybe required. You are the first person with Vasculitis we have heard of to have this... although John has come across this before as he had a friend who was a Mycologist ....

Hope this helps

Susan

[shazza09]

Thanks Susan. It has only recently been diagnosed, after having been coughing for at least 12-18months. I am being given antibiotics and need to see a specialist. It is just so very exhausting as when you try to sleep the coughing starts. Hopefully the antibiotics will help.

Sharon

[pinney in reply to shazza09]

Must be quite wearing for you and little rest. What was it that made your care team suspect this and assume you had uk undergo more tests ? Hope you are on the correct treatment now.

Best wishes

Lynne

[Coppernob]

Hi Shazza, yes, I have also recently been diagnosed with (probable) ABPA, after coughing on and off for two years. And being fobbed off too, of course!

Saw my consultant yesterday. She wants me on at least 10mg prednisolone/day but I'm fiercely resistant to long-term steroid treatment so am on 11mg/day at present, working my way down to around 5mg/day and then hopefully off eventually.

On bronchoscopy they found a huge plug of thick, black, sticky gunk in my right bronchus ('see I told you I was ill'!), that they couldn't get out. I will have a repeat bronchoscopy in about 3 months. Have also been referred to an asthma specialist at the Brompton who also has a special interest in eosinophilic conditions (ABPA is a form of chronic eosinophilic pneumonia).

My Xrays and CT scans are always unexciting. Had high eosinophils and high IgE.

As well as steroids, other treatments include carbocisteine, loratadine (for allergy), fostair inhaler, ventolin and hypertonic saline nebules.

Shazza, I have a blog about all this stuff. If you PM me your email address I can link you into it. I'm not always bang up to date with my entries, mind, but you're welcome if you're interested. Could also make you a FB friend where I have a group called Health Matters and they get links to my blog too.

Hope this helps. Stay in touch. Let's swap notes! JudyCoppernob

[Coppernob in reply to Coppernob]

Oh, and I don't have vasculitis (as far as I know!). I have Hughes and Sjogrens.

[ken13]

I have vasculitis and MPA and I started coughing last august, where a swelling appeared on my left hand side of my lower neck. I was referred to ENT after which I have just seen to be told that thecoughing has nothing to do with ENT ( had a MRI ) and allshowed clear, that took 7 months, now I v had an xray and ct scan and it showed a blood clot in lung, still coughing. no sleep three pillows and just about ready to give up the will to live. hate warfarin. don't know where to turn next. vasculitis is in remission and had two infusions of rutiximab.

[shazza09]

Hi all,

Thanks for your responses. Latest went to see gp who wanted to out me on antidepressant!!!

I just need sleep, so I know where you are coming from Ken.

Judy I will Facebook you.

My wegeners consultant couldn't work out why my chest X-ray not improving with the prednisoline, methotrexate sent me to chest consultant who yesterday prescribed voriconazole 800mg a day! Seems really high dose.

[John_Mills Volunteer in reply to shazza09]

Shazza09 if you would like to talk to John about all this please either phone or email him..he maybe able to help with some sound advice..

Susan

vasculitis.org.uk/helpline

[John_Mills Volunteer in reply to shazza09]

Also John has WG and it did affect his lungs..

[Tidgypud]

Hi Shazza09 . I have Churg Strauss and for the last 2 years i have been suffering with my chest . All tests seemed normalish ? Eventually from a sputem test i was told i had a serious chest infection and was on antibiotics for approx 8 weeks . Then i was told i had a yeast growth on lungs and now ive been told i have aspergillis . I have had an antibody blood test but thats as far as ive got . Hows it going with you and did you contact John Millsw as i thought he may want to know about me too ?