SAFS

[ccccc]

Hello

Has anyone here been diagnosed with SAFS (severe asthma with fungal sensitivity)? I've wondered for a while if I have this since I fit the criteria: I'm on Step 5 asthma treatment, my Ige is less than 1000 but I always have raised reaction to Aspergillius. I definitely have reactions to mould indoors and out, always have done, this has got worse in recent years. Mentioned it to the consultant several times, keep being told there's no evidence anitfungal treatment would work for me, so they keep putting me forward for Xolair but I don't fit the FEV criteria. Can't work, can't go on holiday as I've had attacks which seem to be provoked by different plants/fauna in the local environment. I was prescribed Fluconazole for ringworm by my GP and I think my asthma did improve a bit (I was only on it for a month). Has anyone been prescribed antifungals for their asthma or had this diagnosis?

[strongmouse]

I have an allergy to aspergillosis and joined the Facebook group. They have lots of useful information and input from a doctor who is experienced in it. It is a closed group so you have to ask to join. There is information elsewhere on here about it if you do a search - top right.

[AutumnHedgerow]

Yes, I also have an allergy to aspergillosis and been told my mould allergy is very high. Apparently mould allergies are more common than pollen ones. Xolair was mentioned at my last consultant appointment but am not sure what’s happening with that idea at the moment. What’s the FEV requirement?

[ccccc in reply to AutumnHedgerow]

I believe it's FEV1 of less than 80% (mine's just above).

[AutumnHedgerow in reply to ccccc]

Ah, thanks; mine is substantially above, sounds like it rules it out for me, that’s a shame - but for you it seems unfair that you are very close, but marginally the other side of the benchmark.

[ccccc in reply to AutumnHedgerow]

Mine varies between 82-87%. it is very annoying as I fit the criteria otherwise. They've been dangling the prospect of Xolair in front of me for about 3-4 years now and beginning now to realise I won't get it, so looking at alternatives. Plus you have that consultant thing: one is very pro-Xolair, the other is more sceptical so it depends on who you see...! I would ask again about it as I do think it's partly down to the attitude of the consultant.

[AutumnHedgerow in reply to ccccc]

Thanks cc, I will do, but it’s a way off as I’m now also referred down the ENT route, and he wants to pursue that first. I didn’t realise that FEV was a criterion; he told me my IGe levels were perfect for xolair consideration, but didn’t clarify further. He also said he though I was doing well. Even if I don’t feel I am. So maybe that’s another reason for it being left for now.

Can I ask about your FEV? I’m hopeful mine might improve once I feel better, but sounds like it might be something that stabilises lower eventually?

[ccccc in reply to AutumnHedgerow]

Well I'm only going off what I was told by one of the consultants but I think the FEV criteria would be universal. I think it does lower with age as it was about 90-92% about 10 years ago when I was in my mid 20s, but I don't know how much it declines with age. I've been told "you don't seem too bad" but how you feel doesn't always coincide with what they can measure...!

[AutumnHedgerow in reply to ccccc]

Thanks CC. I really hope you get some resolution soon. Surely the fact that you can’t work must need stronger measures.

[ccccc in reply to AutumnHedgerow]

Thanks, you too. Well I thought so too but then I see some people who look very very ill at the clinic (I look quite healthy in comparison) and I think some consultants get into a mindset of "well this patient doesn't look as poorly as some others" and so the limited resources they have go to them. Which is pretty much my 30+ years of experience with the NHS!

[Minushabens]

I suffer from ABPA which is very similar to SAFS. It is usually diagnosed through blood tests & sputum samples so if you are showing a raised IgE level then you probably need a consultant to have a closer look. I have had more than one doctor in my time asking me what ABPA actually is - because it's rare they aren't always too clued up on it.

As strongmouse suggests there is a Facebook group where there's a load of good advice & people who can help guide you through referral & treatment options.