Update - I saw rheumologist today

[Bronte007]

Hello all,

I saw the rheumatologist today after being referred by respiratory consultant last week. The ‘take home ‘ was in a nutshell the rheumatologist has ‘low concerns but not zero’ . He believes I have had pneumonia from a covid infection at Christmas I didn’t realise I’d had! He’s reassured that I’m improving and that my oxygen sats and breathless is improving. He thinks I’m recovering from ‘mechanics hands’ and doesn’t think my fingers are clubbed. I have some enlarged nail fold capillaries which he said are on the ‘abnormal ‘ side. He is referring for a whole battery of blood tests to rule out a antisynthetase syndrome. He said I could read about this. When I said “will it scare me to death especially the ILD bit being progressive “, he replied that he has had patients that have had stable ILD for 25 years . So I feel better although my blood pressure is still quite high but I told hm how anxious I was which he said was ‘totally normal !’

He also sad he had seen many presentations since covid and it’s thrown many theories out of the window ! Let’s hope I’m one of these and make a full recovery in time .

Thank you for taking the time to read x

[sassy59]

That sounds very interesting Brontë and I’m hoping things do improve for you over time. I’m taking Doxycycline for a chest infection after covid and glad you’ve recovered from pneumonia you didn’t realise you had.

Best wishes to you. Xxx👍

[Nula2]

Gosh that's a lot to take on board! I hope things improve for you 🤞. Take care xxx

[Alberta56]

That sounds positive. It's good news that you are on the up and good that you have found a very thorough and sympathetic consultant. I hope you feel better for seeing him. xxx

[slram]

Good news is always good!

[Morrison10]

Hope seeing good competent consultants will now make life much better and easier. Best wishes Jean x

[Otto11]

This sounds positive & reassuring. I hope things continue in the right direction x

[Bronte007]

Thank you everyone for your encouragement. I do feel better about things although no one has suggested any treatment for my hands apart from moisturiser. The skin has discoloured and is still thickened in patches on my fingers although much better. Would steroid cream / ointment help ?

Any advice would be appreciated

Thank you xx

[PatMat]

I was diagnosed with AntiSynthetase Syndrome in 2015, having initially been misdiagnosed with double pneumonia and PMR. It’s important to know that ILD which can be part of ASS/ASSD/ASyS (it’s known by all sorts of acronyms) is not the same as ILD which doesn’t have an autoimmune origin - and there are more treatment options for autoimmune ILD. Hope that helps a little…….

[Bronte007 in reply to PatMat]

Thank you so much for your reply - it’s been very helpful. I do feel quite well now apart from my very dry hands and occasional cough . I should get my blood results next week so hopefully I will have some answers x