Really scared.

[CindersSue]

I was diagnosed 6 weeks ago of having lupus. I’ve had sjogrens for 6 yrs. My rheumatologist sent me for a chest X ray as I explained amongst my symptoms for Lupus I was a little breathless. She sent me for a chest X ray which has come back clear, I’m waiting for the results of a ct scan. My breathing is getting a little worse, I’m still waiting for my medication as I have to see a specialist nurse first. I’m very worried as I don’t know why this is happening . Has anyone else experienced this.

[Spanielmadlady]

Yes cinderssue. I've had breathing issues for the last 10 yrs . I've had every test under the sun ,had asthma ruled out and I've never smoked. I've had pulmonary rehab, respiratory physio and several hospital admissions. My breathing deteriorates very quickly and the only medication that keeps it stable is prednisone. One theory is my lupus affects the muscles which in turn leads to dysfunctional breathing but no one can agree 🙄. (rheumy,chest and asthma consultants) I've learnt to read it over the years so now know when I can ride it out and when to seek medical help.breathing excerises help as does pacing myself . Like all other aspects of Lupus it can be scary but it is manageable. Kind regards SML xx

[CindersSue in reply to Spanielmadlady]

Hi Spanielmadlady, I’m so sorry to hear what you have gone through and still going through. I’m not sure whether I should visit the dr or get in touch with rheumatology as I’m starting on hydroxychloroquine in 9 days. I have a telephone call from the specialist nurse then. Is prednisone the only med you take for Lupus. I don’t know if the dr will prescribe anything if I haven’t seen the nurse yet. I’ve just received advice from an OT on pacing myself. Thank you for all your info, you’ve been a great help.

Best wishes CindersSue

[Spanielmadlady in reply to CindersSue]

I also suffer chest pain and pleurisy and my excerise tolerance is poor.If you are starting hcq you must have your eyes tested beforehand and every year. No I wish it was lol. I also take hcq, myclophenolate,prophylactic antibiotics and bone protection to name but a few. I've been steroid dependant for 10 yrs so I've just started tacrolimus to try and reduce the steroid burden. If your breathing is bothering you contact your gp even if it's only for reassurance or to check your chest is clear . Try not to stress though because you will make it worse. Breathe in through the nose and out through pursed lips and ensure you are using your diaphragm to breathe rather than upper part of the lungs and shoulders.

Feel free to ask xx

[Lizard28]

I had breathing difficulties before having auto immune problems, my chest X-ray did show some ground glass effect, they gave me antibiotics which didn’t help. My GP thought I was just anxious and printed me out info to stay calm he said it was panic attacks. Yes I think anyone would panic if they couldn’t breathe. I was having a bad episode and called 111 and they told me to come in. I got kept in till they did a high resolution ct scan which showed inflammation in my lungs, it was called pneumonitis. Steriods managed to get it sorted after a while. It was a scary experience. I’ve had inflammation in my had which they thought it was GCA and many other bouts of it in my body. I was diagnosed with mctd and later lupus my RF level was through the roof each time. If you are not happy, keep going back to them

[CindersSue in reply to Lizard28]

Hi Lizard 28, thank you so much for your response. My CT scan & chest X Ray are clear having been to the drs this morning. You may have hit on something having had a high resolution scan. Dr has more or less ruled out inflammation in the lungs and more or less stating its anxiety! Im speaking to the specialist nurse next week so maybe she can help. It sounds like I’ve got a long road to go on. I hope you continue to stay as well as possible.

[FandNnan]

Hi Sue, I'm similar to your other respondents with diagnosed SLE and associated conditions for over 35 years. My breathing deteriorated in particular around 10 years ago when I had a serious bout of anaemia and the high res CT scan showed interstitial lung disease (ground glass changes) caused by lupus inflammation.

I have no specific treatment for that but regular monitoring and have learned to manage bad days or situations. I take hdxy, Azathioprine and Prednisolone as main medication. It's just become part of my illness now.

I hope you hear more soon and find out the reason and any possible treatment.

[CindersSue in reply to FandNnan]

Hello FandNan

There seems to be a pattern with your reply and another lady with the high res CT scan. I’m so pleased yours is under control and manageable. I’ve had a chest X-ray and a CT scan but not a high res one so I hope that if I ask if l can have one they will allow that. Dr thinks it’s anxiety, I am anxious when my breathing isn’t good I don’t know who wouldn’t be but I’m at the mercy of the professionals. Maybe I could speak to the rheumatologist and beg for one. I don’t want to carry on feeling like this. Thank you so much for sharing you ailments and results. Stay as well as you can.

[FandNnan]

Just one more piece of info - I was referred to Cardio Respiratory to see a Consultant about my breathlessness. Initially I had an X-ray, didn't show anything; then a CT scan laying on my back, didn't show anything; then Ct scan with contrast and images taken with me laying on my front as well as back - this showed the changes that are causing my breathlessness. It's now the Cardio Respiratory team I see every 6 months. All the extra consultants I see report back to my Rheumatologist. 😊

[CindersSue]

That’s great information thank you. I’m trying to get back to see my rheumatologist as I thought that was who could request a high res CT scan. The dr has said she would refer me to see my cardiologist ( I had a new heart valve Oct 23 ) . I also had a stroke & Tia in Feb & May 23. He may offer me a CT scan with contrast. I had one before my heart op but not on both sides only on my back. This info could be vital to me as I don’t want to struggle for long My heart valve was a deformity from birth and caused my strokes as the tissue was coming off the valve going into my bloodstream and then into the brain causing a blockage. It’s been a struggle for me since Feb 23 and I’m getting depressed and frightened as I thought I’d solved my ailments with the heart op but Lupus is now taking over. Thank you for taking the time to help me. Sue

[MusicalFurbaby]

Oh yes, many of us have experienced breathing difficulties at some point. A few years ago I had terrible breathlessness which rendered me disabled, but every test came back negative: asthma, COPD, myasthenia gravis, clots, cardiac issues, neurological issues. In the end they worked out my heart was limiting my breathing but couldn’t tell me why! The body is a strange beast, isn’t it?

This year I had a hernia which the specialist advised was affecting my heart. It’s entirely possible the hernia was the culprit behind my breathlessness all this time. It was so big it actually pushed up through my ribcage and pressed against my heart! Sometimes, maddeningly, it takes a while to work these things out. I truly hope you are able to find answers at some point, and that you will find some small relief in the meantime.