Breathlessnes: I have just spent three weeks in two... - LUPUS UK


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I have just spent three weeks in two different hospitals because of breathlessness. My heart and lungs are ok but I do have very mild angina. I was signed of by my consultant last year as my lupus was dormant. But having had so many illnesses some very serious related to my SLE in the past thirty years or so I am worried that the SLE is awakening! I am under investigation at the hospital and am going to have lung function and muscle tests. Has anyone else experienced this?

11 Replies

Yes I've had spirometry tests on lungs and ct and xray. All was clear but breathlessness remains and is quite frightening at times also feels like a tight scarf round my neck. I have hashimotos which fluctuates under then over active.

My mouth tongue and lips keep swelling too for which I'm on steroids. The symptoms are crazy and don't make you feel well at all.

I can totally sympathise. It is horrible.

I feel for you too! How odd your mouth and lips keep swelling. I hope the cause is found. There must be a reason for it. But I hope they don't just forget about you and keep trying . It is horrible I agree.

Think the cause is needing hemithyroidectomy as it's the thyroid. Was supposed to have it done last yr but they opened me up and found a non specific mass so having it out in a couple of weeks. All autoimmune symptoms which are horrendous.

I have a rheumatologist who has just about given up on me cos she doesn't know. Some blood tests high some low but high antibodies. Breathlessness is troubling though.

Best wishes with everything.

Hi dormant Teresa

Sorry to read of your worrying breathlessness problems especially as your lupus has been dormant!. It's good your having tests and it might be a good idea to ask for a referral to a Rheumatologist. There are many reasons for breathlessness and as you've been diagnosed with mild angina you might have pericarditis!. This can include breathlessness and pain as its inflammation of the lining of heart. Have you had an echocardiogram?. This can mimic symptoms of angina and a Rheumy can deal with it as it can be part of lupus. Good luck for those tests and I hope your better soon. X

Hi Misty thanks for your reply. I know it's not pericarditis as I have had it several times. It is very painful. I have no pain just the breathlessness. My angina was diagnosed after I had a angiogram so it's definitely that. But I have to admit when the breathless first started I thought " Oh no not again !" But I realised I had no pain. So your suggestion did make sense. I underwent a lot of test and the only thing they could find was the mild angina which they said was not enough to make me so breathless.I did indeed have several ECGs whilst in hospital.

Hi dormant Theresa

There can be lots of reasons for breathlessness so it's good your being thoroughly checked. Keep us posted how you get on. X

I will do x

Lupus can inflame the linings etc of the lungs in the same way pericarditis effects the heart.

Endocrinology is a good thought.

Absolutely Ignore this thought - Very very rarely the nerves in and around the spine can become inflamed - and can mess with internal organ function. This is extremely rare - as in one in a million lupus sufferers rare - so I truly wouldn't worry about it. (I'm just one of the lucky one in a million) Messes with my Blood pressure, heart and stomach function. Lots of fun. Seems to be improving with upped immuno - suppression.

Just get your Lupus thoroughly checked out. All weird roads tend to lead to Lupus.

HI, I was diagnosed with lupus in 2006 after years of having chest pains and breathlessness which would come and go as suddenly as it came.

In 2006 when I was diagnosed my symptoms were almost dormant and I was thinking why bother to go for consultant's appointment when I was having to have time off work, pay for car parking and sit in a waiting room for an hour just to see the junior doctor.

However in 2007 I had a flare and became very breathless with pain in my chest so I rang the hospital to ask to see a member of my consultant's team. I went and saw his registrar who admitted me straight away because she though I had a blood clot in my lungs.

Blood test showed no clot in my lungs but the next morning when the consultant came to see me he immediately said after listening to my lungs that the lupus has damaged my lungs and a treatment plan was arranged.

I do pray you will get a good result after your investigations.

Hi glad to hear your heart and lungs are clear. Ive had breathlessness for three years now. Heart; arthymia but just electrical. Lungs ok. Thyroid problems but not enlarged so not encroaching on breathing. Anaemia has been a long battle, so we are sticking with that. With no other diagnosis haemolytic anaemia and/or colitis are the main contenders now. This is my breathless story incase any rings true with you.

Well after tests my lungs are fine. There is a cause for my breathlessness though. My diaphragm is pushing up into my right lung. The doctor said I would have breathing physio but to be prepared for the possibility of surgery. Not keen but if needs must. Thankfully SLE is still dormant.

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