Should I be shielding or distancing? Will I get the 12 weeks pay?

[Calmcat]

Im confused. I’m on 800mcg Clenil twice a day (although my pharmacy told me that the manufacturer can not supply it at the moment...eek) and I was put on 40mg oral prednisone a month ago for what was initially intended as a short course but I’m still on it and I’m still struggling to reduce (got down to 30mg daily now). I’ve never had to do more than 4 short courses per year before (but only diagnosed 5 years ago and each year has been worse than the last). Does this mean I have severe asthma?

[Troilus]

Hi Calmcat.

Because of your dose of ics and the fact you are on oral steroids I would say you need to shield. Am I right in thinking you also were on Montelukast but couldn’t take it? Or was it Fostair. Sorry my memory fails me! ( High dose ics + Montelukast was on the list )

But whatever, I would shield. I do remember you have been particularly unwell and that in itself is enough in my book.

So far, I have had a text but no letter and my husband hasn’t had either, but the system is to wait until after the 29th and then contact your GP if you haven’t heard anything. Important if you are being asked to go work, not so much if you can stay home.

How are things going? Are you feeling any better?

[Calmcat in reply to Troilus]

Thanks Troilus - so kind of you to remember- Yes I’ve been unwell with a flare up that just won’t go, yes I couldn’t tolerate monteleukast. They tried Fostair but it didn’t work (I think because it effectively reduced my beclometasone from 800mcg daily to 400mcg daily and I think that’s why I got ill with this current flare up). I then had an asthma nurse suggest Fostair as MART (which really didn’t work and was very scary). I got a bit spooked by reading about asthma deaths with LABA s and switched myself back to Clenil and ventolin I then eventually got a phone appointment with a junior doctor who approved my plan - It felt like the junior doctor was a bit out of his depth and just agreeing with me though. I then decided to increase the Clenil to 800mcg twice a day and got another junior doctor to approve it. But still I’m still struggling to reduce prednisone (tried 25 mg yesterday and had a bad night last night). I’m now thinking of using the Fostair again in addition to the Clenil (keeping the beclometasone element at equivalent to 1600mg daily) but this hasn’t been approved by the GP (yet...?) I feels a bit like I’m having to work it all out by myself and tell them the plan.

Technically that means I’m not in the shielding list at the moment. I’m still signed off sick but when that finishes I fear my Work will pressure me to come in if if I’m not on the list. I haven’t had a text- do you think should I contact the GP if I don’t?

[Troilus in reply to Calmcat]

Yes. If you haven’t heard by the 29th ring them. Or if you need to speak to your GP before then query it.

My thinking is you are on a high dose ics and you were recommended to take Montelukast, which would put you on the list.

You have now been on oral steroids for a month and it doesn’t look as though you are going to reduce those down just yet. Given the usual dose for asthma is a short blast for 5 days I would think that would qualify you. All things worth mentioning.

I’m sorry you are having such a struggle to find meds that suit you. I had difficulty getting my asthma recognised ( I was originally diagnosed with severe emphysema. ) I think this is a problem for those of us who come to this later in life.

I now take Fostair 200/ 6 twice daily, Montelukast, Loratadine, and Braltus.

Maybe ask your GP about Braltus? Have you tried an anti histamine? I’m sort of groping for ideas you could discuss with your GP that might help.

[Calmcat in reply to Troilus]

Thanks- very sound advice. I added in a loratadine antihistamine two weeks ago which I bought (I think after talking to you before? I get so much help from this forum - so glad I found you guys- wish I had earlier in my journey). I don’t know if it’s helping. There was talk of putting me on Spiriva respimat (same as Braltus?) at the Emergency Assessment Unit over two weeks ago now but then the sent me home with Fostair as MART (which didn’t work - I really didn’t feel listened to). I think you’re right- I could ask about Braltus /Spiriva again.

Not sure my experiment of reintroducing Fostair is a good idea. I pinged off an email to the surgery saying I was planning to try it -

restarted Fostair 100/6 this morning (2 puffs of that and reduced my Clenil to 600mcg ) but I feel very shaky and feeble now. Might try one puff this evening (with 700mcg Clenil) and see how it goes. Can’t decide whether to do 25mg of prednisone again today or go back up to 30. I sleep so much better on 30.

Sorry to hear you had so much trouble getting your asthma recognised. That must have been quite a journey!

[twinkly29]

If you're "only" on the Clenil I don't think you'll get a letter as it's not a combi inhaler so, on the AUK thing, it would need to be combined with montelukast.

The steroids are still an exacerbation course so aren't the same as "daily" because they mean long term/all year round.

However, given you've been on high dose oral steroids for a few weeks I would actually shield for the time being as a precaution.

None of this means you have severe asthma though. The confusion is that the government have used the term severe when they mean "at risk of complications if you get coronavirus", which is what AUK have used.

So basically I'd say be careful and shield for now if you can because of the long course of oral steroids you've had at dose.

[Calmcat in reply to twinkly29]

Thanks 😊

[twinkly29]

Ah sorry missed the bit about pay. I don't know but can you call your GP surgery to ask, explaining about the long course of oral steroids and your concern about shielding/the need for a letter for work?