Aspergillus-sensitive asthma

[MrsKypp]

Hi all

I have various allergies but the one my respiratory consultant says is the main one to watch is Aspergillus mould. Tested at allergy specialist hospital central London where ImmunoCAP tests revealed a very high category level of allergy.

I had serious cardiac effects from the LABA part of my previous combo ICS/LABA inhaler so was finally put under consultant care, which has been nothing less than completely fantastic.

My consultant initially planned Xolair aka Omalizumab but when my Aspergillus allergy was diagnosed switched the plan to inhaled ICS (Ciclesonide) with Montelukast.

My asthma and also rhinitis is so well controlled on these two medications it's amazing. As always I have Salbutamol aka Ventolin / Salamol as PRN but very rarely need this - important to have it in case of eg smoke or other strong allergy trigger though.

I now see my respiratory consultant once a year for check ups, but she and I are very happy with this combination of treatments. So is my cardioogist because he wanted me off LABA.

My reason for this thread is to see if anyone else has Aspergillus sensitive asthma and whether in the long term this can develop into the very debilitating lung conditions associated with this. If anyone has experience or knowledge of this that would be great.

My consultant explained that the crucial thing is daily inhaled corticosteroids going directly into the lungs when there is Aspergillus sensitive asthma.

Looking forward to reading your responses

My husband has atopic asthma and like you this was diagnosed following a series of allergen tests.Basically everything they tested for he reacted to. We joke he’s allergic to life. Seriously though he has annual check ups and there has never been any mention of developing any debilitating lung conditions. His is well controlled with his ventolin inhalers which he takes morning and night. He also uses Beconase and antihistamines all year round. He occasionally has to have steroid tablets or montelukast.

@Ruggerlass

Great to hear your husband's asthma is also well controlled.

Do you know if one of his allergies is mould or more specifically Aspergillus mould?

The lung conditions I was referring to are these (I have asthma with fungal sensitisation - Aspergillus is the fungus):

• allergic bronchopulmonary aspergillosis (ABPA) – an allergic reaction to aspergillus mould, usually in people with asthma or cystic fibrosis
• chronic pulmonary aspergillosis (CPA) – a long-term (chronic) infection in the lungs
• acute invasive pulmonary aspergillus (IPA) - a life-threatening infection in people with a weakened immune system where the fungal infection has spread into the lung tissue
• aspergilloma – a ball of mould in the lungs which usually occurs in areas of the lung damaged by previous infections, such as tuberculosis (TB). It’s often linked with chronic pulmonary aspergillosis (CPA)
• aspergillus bronchitis (AB) – aspergillus mould causes an infection in the large airways (bronchi)
• severe asthma with fungal sensitisation (SAFS) – if you have asthma that flares up a lot, you might be sensitive to fungi.

Also listed:

• Types of AspergillosisChronic Pulmonary Aspergillosis (CPA)
• Allergic Bronchopulmonary Aspergillosis (ABPA)
• Invasive Aspergillosis
• Aspergillus Bronchitis
• Severe asthma with fungal sensitisation (SAFS)
• Aspergillus nodules
• Fungal Sinusitis
• Aspergillus Pneumonia

https://aspergillosis.org/#gsc.tab=0

I’ve just asked him. He has none of those, Apparently mould was one of thr few things he wasn’t allergic too.
I do hope your asthma remains under control

I had some tests a few years ago when my cough variant asthma was getting worse. I had a productive cough that got worse over about 10 years. The tests did reveal a sensitivity to Aspergillus mould and I was advised to avoid it.

The main problem though was bronchiectasis and that's what caused most of my coughing. I was given all kinds of oral ABs but none made much difference.
I couldn't get on with montelukast or another inhaler I forget which.
I take inhaled steroids.
My lungs got dramatically better after I was hospitalised with covid in 2021. I was treated with high doses of antibiotics, among other things, and once recovered my lungs were clear. Theory is that I had some lingering unusual infection which was killed off by the IV tazocin.

I avoid mould if I can, especially when gardening. That's all really.

Thanks for asking him and for your good wishes. I hope the same for your husband's asthma.

Hi @OurMavis

How interesting the IV Tazocin helped you so much after you'd suffered so long and other antibiotics didn't work. Maybe they should have done a culture test on your sputum years earlier, but at least it's improved now.

So you're also on inhaled steroids, it does seem to be the main treatment for Aspergillus sensitive asthma doesn't it unless a step up to Xolair etc etc is needed.

I heard some people have terrible problems with Montelukast. Sorry to hear you didn't get on well on it, but thank goodness it sounds like your asthma is ok on the ICS.

I also had terrible problems on a ICS/ LABA combo. There are just so many phenotypes it seems infinitely varied so it's good when we find a great consultant.

Like you, I try to avoid mould but Aspergillus is apparently all around. My consultant said to avoid building sites too. Luckily I don't work in the construction industry or in gardening.

Maybe they should have done a culture test on your sputum years earlier, but at least it's improved now.
The consultant wasn't great, they really weren't interested and discharged me. The improvement was an incidental benefit. I do dread getting back to that stage as no-one, including respiratory consultant, took me seriously.
They did try me on Fostair but it gave me palpitations and shakes.
I don't really dwell on it now as I have other health conditions that are more pressing.

@OurMavis

Sorry to hear your consultant wasn't great. I'm not surprised you dread getting back to that situation with your lungs and not being taken seriously.

Was that Fostair the first time you'd tried ICS/LABA?

I had actually been on ICS/LABA inhalers for ages and ages. They used to work for me but then didn't. The asthma nurse just kept saying to double my dose. The nurses are so obsessed with the ICS/LABA inhalers Air and MART that they are blinkered to anything else or to them not working - or to the dangers. Still didn't work anyway, but made my heart almost give up. LABAs can cause terrible heart damage as I experienced.

If you can't breath you can't do much that's the trouble.

I was extremely fortunate getting my respiratory consultant; she has been brilliant and nothing like the one you had. Good ones do exist. I hope you'll never need one again, but if you do, fingers crossed your experience will be much better than last time.

Sorry to hear you have other health conditions. When I was on chemotherapy for cancer, my consultant explained this Aspergillus sensitivity means a higher risk of the damn mould invading organs. Thank goodness that didn't happen to me. I hope you aren't going on immune suppressing meds.

Thanks again for your replies and best wishes for your health.

I am on immune suppressing drugs, I would be unable to function without, and I had chemo for breast cancer a few years ago.
I use seretide inhalers now. Prior to the improvement in my lungs all any HCP did was increase the dose, never made much difference.
I don't think it's useful to worry about what might happen health wise. I try to live a healthy lifestyle and keep as fit as possible.
Good luck with your health.

@OurMavis I'm really sorry to hear that. I truly wish you all my best with the health conditions you are dealing with.

It was Seretide I got serious medical issues from (heart). But I have also been on others including Fostair.

What turned out to be the case for me was that the LABA part of these combo inhalers was damaging my heart, and in fact I didn't even gain anything from taking the LABA because my asthma is soooo much better now on a high dose Corticosteroid inhaler and Montelukast.

Asthma is so heteregenous and of course so are our bodies in how they react to the medications.

Same as your experience: until I saw my consultant, all the HCPs did was increase my dose of ICS/LABA. It's poor practice and needs refining.

Your point is interesting about not worrying about what might happen health wise. I know the NHS waits until we are unwell with something and then they act, but I worked abroad and also got to know the system there where they do things more preventatively. I think we maybe each need to do what suits our own personality.

Definitely agree with you 100% about trying to live a healthy lifestyle and keep as fit as possible.