HRCT chest BSR 2024 guidelines

[lynntregaron]

The new BSR guidelines published last year states that all newly diagnosed SSc patients should have a baseline HRCT chest examination. For those of us who were diagnosed decades ago has anyone been offered a HRCT chest even though they are asymptomatic of chest complications? I have, supposedly, annual pulmonary function tests and an echocardiogram which are essentially normal. Other people's experience would be welcome before I see my consultant this week. Many thanks.

[OldTed60]

Hi. I have Systemic Sclerosis and Sjogren’s and have only had an HRCT for other reasons - once looking for signs of Sjogren’s related Lymphoma about 4 years ago and another a few years ago due to problems with recovering from a bad fall with lower rib fracture. The latter was through A&E so I’m not sure how thorough it was but anyway neither of them were done as part of baseline SSc testing.

I think a lot of the recommendations in the new BSR SSc guidelines are the ideal for all Scleroderma patients but not always the reality with a beleaguered NHS. The situation in my Scottish hospital is that the echocardiogram service isn’t able to cope with the volumes of urgent referrals as things currently are. So they have to prioritise as they don’t have the same NHS quotas to meet so are inadequately staffed. So if someone with SSc has had no previous cardiac history or symptoms and their PFTs were fine then they may put us on the back burner for routine echo unless they get hassle from rheumatologists.

[LadyTrundle]

I did have the HRCT of the chest in the first year of diagnosis so in 2021 - I am under the Royal Free, and they requested my gp to organise it, who first had to refer me to the rheumatologist at my local hospital (who is pretty switched on to Ssc) who then requested it internally. It took about 10 months - and when I got the results I had to photograph and email them to the Royal Free as there seemed no other way of them getting back to them. But heigh ho, I got my baseline!

[HJP7 in reply to LadyTrundle]

Isn't it crazy that we have to work so hard! I've had a similar experience of trying to work a way when it's not our job to do so. The pathways don't seem to exist. I moved from SRFT Manchester to derby nearly 2 years ago. Only just now being seen by rheumatology Derby & beginning to hopefully join up services. . Had to stop Bosentan because GP refused to do bloods. Crazy. Thank you for the much needed rant.

[Jacko37 in reply to HJP7]

OMG, can believe your GP wouldn't do bloods. I was on Bosentan a few years ago. Had to stop after a month or so because they caused a drug induced liver injury and made me really ill. These bloods are so important and only take a few minutes.

[elprof57]

My rheumatologist advised me to have a spirometry exam ( for lung function), an echocardiogram and chest HRCT once a year.

[itexpat]

Hi, I was recently diagnosed with systemic sclerosis and the HRCT was the first test they did. Next weekI have a pulmonary function test. Since these pulmonary complications are associated with the SS, I also heard they should be run once a year. all the best