Can anyone advise?

Hi I have posted a couple of times about my rather vague diagnosis - namely lupus (for which I take prednisolone and mycophenolate), small airway narrowing (Bronchiolitis), and restrictive lung disease (weak respiratory muscles). I have repeated bouts of pleuritic pain and 2 areas of tree-in-bud (on HRCT) but no one is worried about these. I started on a trial in 2014 on Flutiform and Eklira which helped but I felt I had greater benefit from the Eklira despite finding it horrible to use. In 2015, I started on Anoro with good results although not great impact on my PEF. My notes state that the presence of asthma has never been established. During the past few weeks, I have had an increase in shortness of breath (PEF remains unchanged) and a persistent dry cough. My regular blood tests show no anemia and my WBC is low as usual at 2.8 so no obvious infection. I reached for my old Flutiform inhaler and things have quickly improved - does this point towards a possibility of asthma after all? Are there any other conditions that would respond to a steroid inhaler in this way? If I go to my GP when the flutiform runs out, she will send me straight to my consultant which I don't think is necessary and I don't seem to qualify for the Asthma/respiratory nurse so I'm hoping the HU experts can give me some advice.

Any thoughts would be gratefully received. Thanks. Clare

9 Replies

  • Hi there, I think that it is very difficult for any of us to give you advice because you have such a complex combination of symptoms and conditions. Hopefully somebody may come along.

  • Thanks for replying, StillStanding. I never think of myself as complicated but my Doctors do use the term from time to time! Thanks again. Clare

  • Would love to help but your condition is obviously complex, with several things going on at the same time. You are entitled to more clarity from your doctors. You don't mention a consultant? What is her/his explanation? You possibly have several consultants; one for the lupus, one for the lung disease...

    Sorry to be no help, there are people on here with complex conditions who will be able to help. hang in here and someone will come along. i haven't tried the BLF nurses but people do say they are good.

    All the best and let us know how things are.

    K xxx

  • Hi Katinka and thank you for your thoughts. I do have Consultants in several fields. They each seem to defer to the other - my Resp consultant recommends tight lupus control as the route to symptom improvement whilst the Rheumy always seeks reassurance from the other specialists.

    Clarity certainly is an issue - I was told I was being treated as though I had COPD/emphysema and told in the same breath that I did not have either of these conditions! Doctors don't like Lupus - it's too unpredictable.

    Many thanks. Clare x

  • I do sympathise. it is a very nasty condition and often takes a long time to diagnose. The farmer's wife over the road had a sister with it and campaigns tirelessly for the sufferers. Does the name Professor Emery mean anything to you? He's at Leeds, at least he was.

    My condition is complex but nothing like as difficult as yours.

    K xxx

  • I have heard distantly of Prof Emery but I live in South Somerset so Leeds is a long way away. I see my local Rheeumatologist and a Prof in Birmingham. The Prof's team is not convinced that my breathing issues are attributable to the Lupus but my resp Consultant does and so do I. Many thanks. Clare.

  • I am sure you are right. I am a great believer in patients knowing their own bodies. If you feel that lupus is causing the lung problem then go for it. Trust yourself.

    All the best and let us know how things go.

    K xx

  • Sorry,I can't be any help! A friend of mine had lupus,& it was complex & very tiring for her.But you have so many other issues to deal with,so I can only wish you all the best with it all,

    Wen xxx

  • Thanks Wendells. I guess a trip to my GP is unavoidable . . .

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