Confirmed ABPA, referred for Biologics

[Tiggertheterrier]

Hello all,

Seen by my amazing new consultant today. She confirmed that I defo meet the criteria for ABPA on top of my twitchy asthma. She has referred me upwards to be fully assessed for biologics. In the meantime I have yet another fourteen days of the trusty Pred😬. I might also be tried on oral itraconazole if the referral is taking a while to come through. More blood tests to see what the current Ige level is.

So the battle continues between me and my annoying, mucous factory lungs.

I must learn to accept each day as it comes. It is what it is, and although exceedingly frustrating and often debilitating, I feel like progress is being made in finding a way of managing it more effectively.

Having lived with my asthma for nearly 50 yrs, this later bit of the journey started in 2019 with the fight to find out why it was getting SO out of control. It has taken me pestering the life out of medical secretaries and, in desperation, a house move of 250 miles to get the answers. Never give up folks, keep asking questions, keep prodding and 'be a pest' if needed !!

[Caspiana]

* For people who don't know the abbreviations ABPA stands for Allergic Bronchopulmonary Aspergillosis, a lung condition characterized by an allergic reaction to the fungus Aspergillus.

Good to hear you have made so much progress Tiggertheterrier. Wishing you all the best.

[Tiggertheterrier in reply to Caspiana]

thanks caspiana, and for filling in the abbreviating- I always forget!!!

[Swizzy]

Well done in being so pro active and determined to get the right diagnosis and treatment. It is so exhausting to keep persevering when living with the debilitating effects of the condition. I do hope that it is moving the right way now and that you will soon have the treatment that you need and can begin to feel better.

[Tiggertheterrier in reply to Swizzy]

Thank you! You have been a great source of info and comfort for me in this battle. The initial diagnosis of bronchiectasis ( later ruled out!) turned out to be a red herring. But lung clearance is vital to both that and ABPA. The consultant was keen to emphasise the positives - quite a good spirometry, erratic but generally good PF readings and the fact I do my very best to keep active! Also that ABPA responds well to the right biologic if I pass the assessment. Xxxx

[Mydoggnasher]

Well done...gotten the results you needed at long last. Hope all goes well from now onwards 🙏 👍 😊. .

[Patk1]

I'm glad u now have answers.hopefully biologics will help u.im on fasenra for severe eosinophilliac asthma.its had beneficial impact reducing my >90% airway collapses and helps bronchiectasis too as I'm not dealing with as much asthma mucous in upper airways.hope steroids dampen things down a bit, for you x

[Tiggertheterrier in reply to Patk1]

thank you! I am SO relieved, and feeling very lucky to be now living where I am, close to major hospitals with good respiratory specialists and much shorter waiting lists than north Wales🙂 The steroids will give me 2 welcome weeks of respite from the worst of ththe Mucous. Xxxxx

[Izb1]

Well done you. At last you can see light at the end of the tunnel. Hope you get the meds soon x

[Tiggertheterrier in reply to Izb1]

thank you. The relief is huge!! Xx

[Biker88]

if you haven’t found them two very good websites Aspergillosis.org and Aspergillosistrust.org, along with facebook Aspergillosis Trust Support and National Aspergillosis Centre Support. The National Aspergillosis Centre based in Manchester host two “teams” calls a week and a monthly teams meeting, which give the opportunity to talk to other people on the same journey as you

[Tiggertheterrier in reply to Biker88]

Thanks Biker88, yes I have discovered them! I think my treatment will either be at the Freeman Hospital or the RVI, both in Newcastle and less than 30 minutes away from me.

[Alberta56]

🎆Well done for persisting. You are an example to all of us. Glad you've got a good consultant and at last the prospect of effective treatment. Hooray! 🎆🎇🎆✨💐💐💐🌞🌞xxx

[Tiggertheterrier in reply to Alberta56]

thank. It shouldn't have to be ththis difficult though! I did tons of research and in the end, had to be very stubborn and insist on Ige testing. Phew!!!

[PaperQueen]

So pleased for you that things are moving along and they seem to be helping you. I agree about being a pest if necessary! All the best xx

[watergazer]

Well done for being so determined to sort out your condition and getting the correct help. A house move of that distance is something! Take care xx

[Tiggertheterrier in reply to watergazer]

Thank you. We all know our own bodies, I KNEW it was allergy related but persuading the medics proved trickier than it ought to have been. I had to ask over and over again for Ige testing. Xxx

[Otto11]

Well done for persevering. Fingers crossed for you 🤞

[Petetriplet]

hey Tigger the terrier (love that name )

I too gave had asthma after being born a triplet in Wednesfield Wolverhampton at New Cross Hospital. I was the smallest and was given the last rights but I pulled through- December 1954. Last year I noticed I was having more exacerbations Doxycycline / Predisilone. So I referred myself to a respiratory consultant. ( private ). He advised me to have a CT high res of my lungs. This showed I had bronchiectasis in my right lower load. No cure but things could be done to make my life easier.

He said I was destined to have this as being a triplet the other two compromised my development. So now I do breathing exercises daily to expel the rubbish in my lungs. On top of that he advised a sleep test as those with respiratory issues often succumb to Sleep Apnea. Yes I now wear a fetching face mask at night😎

At 70 years I have been around the World in the Merchant Navy 25 years with West Midlands Police, 14 years Retail management and finally a college Lecturer. A short break to have a brain op to install a shunt in my head as I had a blocked ventrical. ( migraines at the age of 11 with a tremor in my hands ) Ten years later urgent brain surgery to put it right.

Life is good I am just getting old.

Best wishes

Pedro

[islande]

good luck in your treatment