Brochiectasis & Those patients receiving prophylactic antibiotics such as inhaled antibiotics or macrolides.

[KatyMac]

DH has bronchiectasis and is on daily antibiotics - Doxycycline

But this apparently isn't the same as "Those patients receiving prophylactic antibiotics such as inhaled antibiotics or macrolides." which is the criteria for shielding

Can someone explain why? Is it because they aren't inhaled? What is the difference is and when there other treatments came into use?

DH hasn't been to Papworth since 2013 as his attacks have been under control with physio and the antibiotics?

So while we are going to continue shielding him, I'd like to understand the differences to the criteria

Bump

He needs to speak to his medical team for advice.
It’s not a one size fits all rule, the shielding guidance was put together in haste and isn’t exhaustive.
His specialists at Papworth will be in the best place to advise

*sorry, scanned quickly. Just seen he isn’t under Papworth any more. Speak to the GP who can call for advice if there’s doubt

I'd have read that guidance to mean that he does fall into the shielding group as he is taking prophylactic antibiotics. The part about inhaled or macrolides I read as being examples of prophylactic antibiotics, not that only people on inhaled or macrolides count.
The British Thoracic Society (I think you got the guidelines from there) gives more details. I'd recommend having a good read of those and contacting your GP for further guidance.

It's daft isn't it - he has been medically retired since 1993, has a superb exercise/physio routine and has been clear of infection for nearly 10 years (well 2 infections in 10 years) so he is very 'well' for an extremely ill man

He might seem very well, but its the prophylactic antibiotics and physio that have kept him that way - if he's deemed by his GP to need to shield then it's because if he did catch COVID he'd be at high risk of a poor outcome.

He is currently using about 2/3rd of his lungs as the other part is damaged so yes I'd assume it would be a bad outcome

But the GP disagrees - so we are shielding voluntarily

I guess the reason I'm always so concerned is that Papworth told us a cold could kill him so we have always sort of shielded/semi-isolated in the winter when people have colds/infections so he didn't get them

Ah I see, sorry that your GP isn't being helpful. Of you can get an appointment maybe go through the BTS guidelines with him and ask him why your husband doesn't fall under the prophylaxis criterion? Do you have a severity score for the bronchiectasis? You can look up how to calculate this online.

I guess it's low

But Papworth were so emphatic that he would 'always be a risk' from an infection & that we should be careful in flu season every year

I suppose we have taken such good care of him he hasn't really had many infections

Do you need him to be certified as "shielding" for work? If not then perhaps just keep doing what you feel most comfortable with. I'd generally take the advice of the specialists over the generalist though.

It is the way we have lived for nearly 10 years - albeit a bit extreme atm

He hasn't worked since 93 in 2007 he had 13 chest infections in 11 months then 3 admissions to Papworth in less than 15 months

Tesco's have (finally) believed me that we don't go out 7 we have friends who get our prescriptions so we are OK

I am just confused the GP says it's because he hasn't seen a consultant in so long- be great if his lungs had magically grown back!

I have brochiectasis and I am not under a hospital consultant. It's controlled with physio and I take carbocisteine.
I was diagnosed with asthma years ago and take a high dose inhaler mainly for the bronchiectasis.
I received a shielding letter though it could have been for the asthma or another condition.
My feeling is that Covid is a lung disease which makes the worst affected patients feel like they are drowning. That's what untreated bronchiectasis feels like. I would therefore think it's at very high risk.

However shielding isn't compulsory even to those with a letter, I'm not sure what advantage he would get as he's not working anyway?

We could have done with it when we couldn't get food but fortunately a few weeks ago we persuaded the Tesco lady on the phone that we needed to have deliveries.

I guess I just feel the GP surgery is dismissive of his condition - but now is not the time to fight it

DH is on Carbosistine and fostair but he feels the fostair isn't as good as the qvar (I think) he had before

I'm in a bronchiectasis online group and while many have had the letter many haven't. It seems to be to do with the number of infections as well as the antibiotics. I had the shielding letters but I'm on prophylactic azithromycin and also a load of other medication including hypertonic saline and carbocisteine and itranacozole, I'm not sure it's so much the meds but my history, I have had about 8 infections in the past year including 2 hospital admissions for pneumonia and am under a consultant I see every 3 months so thought it's probably more to do with that. So pleased your dh is controlling it so well, that's brilliant and a ray of hope for those of us who can't seem to get it under control, mine just seems to get worse but it's all over every lobe and have aspergillosis too.

If I were you though I'd keep him shielding because the vulnerability is there despite how well he is at the moment and that's what Covid could hit I guess. It's certainly caused a lot of fear and debate in the groups as people are not quite sure what to do. So probably best to go as carefully as you can.

@madhairday for him the thing that stopped the infections was the doxycycline and 2 hours of exercise 5 days out of 7 he drops the exercise her gets an infection :(

We will Shield of course
I have spoken to so few people with it!! He didn't have the aspergillosis but had a something else and an immunity issue for hemophilus influenza (which oddly despite the name isn't a flu)

I have allergic aspergillosis as well and haemophilus. The respiratory consultant discharged me once he did the diagnosis, with no aftercare. It was actually another consultant who arranged for me to see a chest physio. She also explained that I would probably always have some element of haemophilus as its difficult to eradicate. I had doxycycline a few times last year but not in last few months.

I have never met anyone who's even heard of bronchiectasis!

Dh was diagnosed properly in 2005 but had been I'll since 1993

He hasn't missed a day's doxycycline since 2010 apart from 2 x 2 weeks on 1000amoxycillin or co-amoxyclav 3 times a day (plus pred) when he had a chest infections in the last 2 years

It's so scary

I know what you mean @JustSew, hardly anyone has heard of it - including a lot of doctors! What do you take for your aspergillosis? I'm ok itranacozole but it's not really helping.

My bronch is severe and widespread so has a massive effect on my life, I get sick a lot :( I've actually felt better while shielding - was in hospital back in Feb with double pneumonia but better since then. I'm not picking up the bugs I guess! But still desperate to get out, I hadn't really been out since before Christmas due to being really ill with this pneumonia.

That's good your dh has found a good exercise regime that helps, Katy. I do exercise but always get despondent because however much I do I still get poorly and then lose all my fitness and have to start again. I am using an exercise bike at the moment in lockdown and it is helping build up some stamina though some days it's harder than others as have a lot of pain (pleuritic usually.)

I agree about the doctors I think our current one is in cloud cuckoo land

Our old GP gave us a letter to take on holiday with us saying "if he presents with a cold or minor chest infection treat with a sledge hammer, dont mess around with "lets see how you are in a few days" nonesense hit it hard!

Hi just spotted this dd 35 has Down Syndrome, pacemaker for a heart defect and bronchectasis She takes antibiotics X3 /day. We have had a shielding letter but what it is for I haven't a clue.Hope you sort something out soon.