Anyone who has SLE, and lung issues?

[Staceylouise90]

Hi guys,

Me again....

I’m literally going insane tonight.

My left upper back is throbbing which is always does near my lung...

Does anyone have any issues with there lungs from SLE, my CT was Monday and was told today to come see the consultant first thing thing tomorrow morning to discuss them!

Previous X-ray showed some thickening of my Left lung, plus coughing blood and continuous chest infections and mucus ——- plus positive ANA and dsDNA which I’m seeing rheumatology for... which my results GPS etc are confident it’s SLE plus with the respiratory issue.

Question is did anyone have a CT scan and was ask to go and see the consultant straight away and if so what abnormal scan did it show?

As you can imagine I’m thinking worst case. :/

Many thanks

[Princerogers777]

Just recently hsd bad xray ,& CT scan they say its intersitial lung disease caused by the lupus, im scared so now on 40 mg prednisone on top of my methotx, plaquenil and azathioprine ,losartan, n vitamins C, calcium,iron, gabapentin ughhhh i hope this gets it to slow or stop progression good luck my dear

[Staceylouise90 in reply to Princerogers777]

Hello Prince, thank you for your message. Did you end up have a bronchocopy? the CT scan showed on my right lung bronchit has a lot of thickening than my left one and she has booked me in for an urgent bronchocopy this Tuesday afternoon. She said she will go it and try and clear it as much as possible and do a biopsy. Slightly nervous the though of a camera down my throat into both lungs scares me being awake! She did another spirtory today and still shows a dip in my breathing which she thinks could be from this thickening and inflammation. There acting quick which is helpful... she said it could be connected to the lupus but will know more she’s inside and what it looks like internally and then she can speak to rheumatology with the outcome. She doesn’t want to put on any medication untill after Tuesday before she starts anything. She is doing the procedure so I’m happy as she seems nice just need to not panic! Thank you to everyone for your kind words. Xxx

[Princerogers777 in reply to Staceylouise90]

No bronchoscopy as i had no fever or cough symptons other that shortness of breath upon exhertion. After xrays he mentioned ILD right away, i was prayin it coulda just been an infection or something that could be cleared

Praying it at least slows progress.

[Salzer]

I don't have lung issues but just wanted to wish you good luck for today. Hope you managed to get a least a bit of sleep? So worrying for you but hopefully you'll start to get some answers and more importantly some help today. Thinking of you and sending you all the luck and strength. S

[Staceylouise90 in reply to Salzer]

Thank you salzer. I had 0 sleep as you can imagine lol. Thank you, so.... the CT scan showed on my right lung bronchit has a lot of thickening than my left one and she has booked me in for an urgent bronchocopy this Tuesday afternoon. She said she will go it and try and clear it as much as possible and do a biopsy. Slightly nervous the though of a camera down my throat into both lungs scares me being awake! She did another spirtory today and still shows a dip in my breathing which she thinks could be from this thickening and inflammation. There acting quick which is helpful... she said it could be connected to the lupus but will know more she’s inside and what it looks like internally and then she can speak to rheumatology with the outcome. She doesn’t want to put on any medication untill after Tuesday before she starts anything. She is doing the procedure so I’m happy as she seems nice just need to not panic! Thank you to everyone for your kind words. Xxx

[Wendy39]

Morning

I have no idea what your doctor is going to tell you. But I do know people with lupus and lung involvement. I can totally understand how anxious you are second guessing what is going on. We’ve all been waiting for test results at various times and it’s mental torture.

Are you able to take someone with you this morning? Just to help listen to all of the info? As it’s common to come out and not have remembered everything said.

And finally, please let us know how you get on, when you feel up to it.

I’ll be thinking of you.

Wendy x

[Staceylouise90 in reply to Wendy39]

Thank you, so.... the CT scan showed on my right lung bronchit has a lot of thickening than my left one and she has booked me in for an urgent bronchocopy this Tuesday afternoon. She said she will go it and try and clear it as much as possible and do a biopsy. Slightly nervous the though of a camera down my throat into both lungs scares me being awake! She did another spirtory today and still shows a dip in my breathing which she thinks could be from this thickening and inflammation. There acting quick which is helpful... she said it could be connected to the lupus but will know more she’s inside and what it looks like internally and then she can speak to rheumatology with the outcome. She doesn’t want to put on any medication untill after Tuesday before she starts anything. She is doing the procedure so I’m happy as she seems nice just need to not panic! Thank you to everyone for your kind words. Xxx

[Staceylouise90 in reply to Wendy39]

Thanks Wendy, I went alone - but wasn’t too bad as she’s a very nice consultant and showed me my CT scan and explains things well! Xx

[GlasgowHen]

Hope everything was ok today xx

[Staceylouise90 in reply to GlasgowHen]

Thank you, so.... the CT scan showed on my right lung bronchit has a lot of thickening than my left one and she has booked me in for an urgent bronchocopy this Tuesday afternoon. She said she will go it and try and clear it as much as possible and do a biopsy. Slightly nervous the though of a camera down my throat into both lungs scares me being awake! She did another spirtory today and still shows a dip in my breathing which she thinks could be from this thickening and inflammation. There acting quick which is helpful... she said it could be connected to the lupus but will know more she’s inside and what it looks like internally and then she can speak to rheumatology with the outcome. She doesn’t want to put on any medication untill after Tuesday before she starts anything. She is doing the procedure so I’m happy as she seems nice just need to not panic! Thank you to everyone for your kind words. Xxx

[KayHimm]

Stacey - thinking of you today. I know they will present you with a plan to help you. It is all scary and has moved fast for you in recent days.

You will taken care of. Keep us posted.

XK

[Staceylouise90 in reply to KayHimm]

Thank you, so.... the CT scan showed on my right lung bronchit has a lot of thickening than my left one and she has booked me in for an urgent bronchocopy this Tuesday afternoon. She said she will go it and try and clear it as much as possible and do a biopsy. Slightly nervous the though of a camera down my throat into both lungs scares me being awake! She did another spirtory today and still shows a dip in my breathing which she thinks could be from this thickening and inflammation. There acting quick which is helpful... she said it could be connected to the lupus but will know more she’s inside and what it looks like internally and then she can speak to rheumatology with the outcome. She doesn’t want to put on any medication untill after Tuesday before she starts anything. She is doing the procedure so I’m happy as she seems nice just need to not panic! Thank you to everyone for your kind words. Xxx

[KayHimm]

Thanks for the update. You probably thought the CT scan would be enough to make decisions, and now you have another big test. Actually, it does sound familiar from my days working in a hospital. They really do often have to do procedures to know what they are dealing with. Know that the pulmonologist and the rheumatologist know what they looking for and will work together to do what is best for you.

Anyone would be nervous about a bronchoscopy. Ask if and how much you will be sedated. I have never had a bronchoscopy but a cardiac test that involved a tube going down my esophaguses. I was sedated and able to signal when I wanted more medication.

Maybe someone here has had a bronchoscopy and will be of more help.

Yes, they are acting very fast. When necessary, other patients have to get canceled to put urgent cases in. So we know the system is working in your case.

XK

[AnyHill89]

Hi, the prompt attention you are receiving is amazing, though I am sure you don’t think it’s quick. The biggest thing is to diagnose issue to then be able to treat & thereby stabilise any condition. It took 20yrs for my Mum to be diagnosed & by then she had degenerative lung disease too. But now under care of Papworth Hospital who manage & monitor her condition. She is such an inspiration & is in full time teaching role as well as studying for additional degree. Nothing holds her back & that will be you soon too.

Positive thinking and vibes being sent your way 👍😄

[Gingerbread1]

Hey. I have a similar thing going on. My rib cage hurts so much especially in back. Hurts sometimes when I breathe deeply. Hurts to the touch. Short of breath occasionally. Anyone have this?