Any advice?

Hello everyone. I was diagnosed with pneumonia 2 and 1/2 months ago. It won't respond to antibiotics including a stay in hospital where I was treated with a weeks IV tazocin. My symptoms include breathlessness, terrible joint and muscle aches, a temperature that comes and goes together with many other things. I am seeing a respiratory consultant tomorrow. I think I may have lupus. Any advice / thoughts. Thanks in advance.   

4 Replies

  • Hello Karen 

    Am sorry you're having this ultra hard time

    My instinct is that you may benefit from referal to immunology.  

    I've been under investigation by immunology for 1 year now due to early onset lymphopenia + hypogammaglobulinaemia (from way before I started on lupus immunosuppression for my infant onset lupus).  

    In the course of these investigations immunology has discovered I have virtually no antibodies to pneumonia - and, what's more, I produce no pneumonia antibodies in response to both types of pneumonia vaccine (pneumovax & prevenar).  My immunology dept is at a major international university hospital...the consultants tell me my lack of pneumonia antibody-making is highly  unusual...and that there is a strong possibility I have a PID (primary immunodeficiency).   This means I'm highly at risk of infections generally.  Knowledge is power...having analysed the specific deficiencies in my individual immune system, my Drs & I can be somewhat better prepared to get straight on to high dose long course IV treatment.  Meanwhile immunology is continuing to refine my diagnoses

    BUT none of my medics are even hinting I'll need to stop the daily lupus combined therapy immunosuppression meds which make a huge positive difference to both my quality of life as well as to slowing destructive progressive inflammatory autoimmune process

    Wishing you all the best with this...hope you'll let us know how you get on

    🍀🍀🍀🍀 coco

  • Hi Karenjp, 

    If you suspect that you may have lupus, it may be worth discussing it with your GP and asking for a referral to a rheumatologist. They specialise in autoimmune and musculoskeletal conditions and could investigate further. 

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at

  • As Paul says - I think a referral to a rheumatologist would be far more use than a respiratory consultant. What you describe could fit with a whole range of autoimmune disorders that are not directly due to chest problems, not just lupus. They are a bit more general than immunologists (not that I don't think that is a good idea too but I think they are harder to get an appointment with). 

  • Fresh turmeric root with yolk egg carrot and honey blend of them with warm milk  make a milk shake and drink early morning.

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