SRUK Webinar

[volvox45]

Just to say I attended one of these last Friday: Dr Elizabeth Renzoni on lung involvement in SSc – it was very good indeed; she answered questions that no one else seems to be able to (including the Royal Free specialist department). Knowledge is power! (I wish it was a cure too, but hey…)

[Alice1956]

I agree, it was very good. She answered my question about my current medication, Tocilizumab. I found out that it is not anti fibrotic, but is anti inflammatory. I have moderate to severe fibrosis so am a bit concerned that I am no longer on any anti fibrotic medication. Having said that, I do feel that my breathing has improved on Tocilizumab.

[volvox45 in reply to Alice1956]

Ah yes, I remember your question. It must be disappointing to learn that your medication isn't what you thought, but at least you know what it actually is now, and I'm glad your breathing has improved.

My question was about the link between SSc and bronchiectasis which no one has given me a satisfactory answer to before; and she said there are two types of bronchiectasis: "freestanding" which has no link, and "traction" where the ILD causes the airways to be pulled apart so they are too wide and can harbour bacteria. I assume I have the freestanding one, as I haven't been told I have ILD – but how is it diagnosed? Can it be seen on a CT scan, like bronchiectasis was in my case?

I am not on any medication, by the way. My main symptoms are gastric problems, and subsequent loss of weight.

[Alice1956 in reply to volvox45]

Yes, the high resolution CT scans clearly showed my ILD and traction bronchiectasis. It is so important for us to have annual HRCT scans and echocardiogram to pick on on any changes in lung and heart function.

Do you have a rheumatologist who organises these tests for you? . I hope that you have good support to deal with your gastric issues. X

[volvox45 in reply to Alice1956]

Okay… I don't know if it was a high res CT because it was for another problem entirely and the bronchiectasis was spotted just by chance! So not sure if I have ILD. No, I don't feel I have good support from rheumatology – none, in fact – and just an annual phone appt with gastro since 2020. I saw the specialists at Royal Free in 2020 but nothing since – so much for the "annual check-up" they promised!