LUPUS UK
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Spitting up blood

I have SLE,Fibromyalgia,osteoarthritis & under active thyroid. I have been spitting up blood for about 3 years now and all my consultant says as long as I am not anaemic don't worry-let's address one thing at a time. At my worst when I am flaring (mildly but pretty constant) and I have fatigue that is when it is at the worst. (Most 8 mouthfuls) I wonder if anyone else with SLE gets the same? Many thanks! Loopy-Lou

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Where is the blood coming from? Are you coughing it up or is is coming from your gums?

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Hi, No it is not from my gums..it is coming from inside me somewhere? I am waiting to see a new consultant (end April) as I am fed up with my current one. I cannot believe the consultant doesn't care about it. I have read it can happen with SLE, but I do not know anyone else with it. I don't cough as it comes up (but if I cough when I notice blood I can then cough more up) I first of all thought I may have TB...or something else...had a chest x-ray about a year ago...wasn't told anything was wrong at that point...Interested to see if anyone else has the same? Thank you for replying.

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Hi, I don't know if this will help you or not but I had that about 5 years ago along with breathlessness and ended up spending 3 weeks in hospital. They found out that I had a pulmonary haemorrhage (bleeding into my lungs). Chest X-rays didn't show anything other than some slight shadowing and it was picked up by a ct scan and broncoscopy. They upped my steroids and put me on mmf and now it's pretty much under control.... well I only seem to flare every 2 1/2 - 3 years!!! It may be worth asking them to give you a ct scan to see if the can pin point the cause.

Good luck and I hope they find out the cause

Wendy

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I think you should go to your GP and insist on a referral to a chest specialist get this sorted quickly!

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Hi lupie-Cathy

Thank you for replying. I agree...I just wish they would take it seriously. Does your consultant follow things up? Mine doesn't...this is why I have been re-referred to a dedicated lupus clinic now at my request. That appointment is in 3 weeks so will mention it. Thank you!

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Hi Wendy

Thank you for this. Sorry to hear what you went through. My GP knows about it too. I feel as if the consultant/GP think it is normal-it is not pleasant as you well know. I have just moved and am about to register with a new GP. I will ask for a referral. I think they need to repeat my chest x-ray too. Thank you for this.

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