Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Possible Lupus

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Mar 20, 2017.

  1. littlebird6180

    littlebird6180

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    I have a very close friend who recently got to be evaluated by my ME doctor. She finally got all her test results and the doctor reviewed them with her today and told her that she has a lot of auto-immune markers outside of what she thinks is ME. She said she thinks she has Lupus and that she should see a rheumatologist.

    My friend is too anxious to read about Lupus and is feeling really overwhelmed by the information - she has two really young kids. Most of her symptoms are extreme food intolerances, fatigue, joint/muscle aches and she developed in the last year an allergy to cold temperatures.

    I'm wondering a few things for her: is there a way to definitively diagnose lupus? could the doctor be wrong? is it something she can genetically pass on to her kids? is there a good support group like PR for it? and is Lupus like ME in that it's hard to find a doctor that really understands it and is knowledgeable about it and doesn't take an old school approach -- or is the treatment fairly standardized?
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    1. Definitive diagnosis of lupus is usually easy for a rheumatologist who has worked in a lupus unit. An 'ME doctor' might well suspect lupus when it isn't though. And some people remain on the borderline, but there is still a clear action plan for management. Seeing a rheumatologist with lupus expertise should give a clear cut answer and if it is lupus it needs to be diagnosed and managed.

    2. The risk of lupus in children of patients is low. It is slightly increased above the general population but the general risk is one in a thousand. For children that might rise to one in a hundred or even one in fifty but that is still pretty low.

    3. There are good lupus support groups but most lupus patients get the information they need from physicians because lupus is well understood and people know what treatments work and what do not.

    4. Lupus is not at all like ME in that any rheumatologist trained in a lupus clinic who themselves specialises in lupus will be extremely knowledgeable about the condition. Treatment is entirely standardised. There is no such thing as an old school approach or otherwise because treatment is based on extensive research and reliable evidence.
     
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  3. littlebird6180

    littlebird6180

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    Thank you, this is extremely helpful.

    I tried to reassure my friend by saying that the diagnosis is just a name for what she already feels. That it's not like getting this diagnosis means her health is about to rapidly decline or change from what it is. If anything, having this diagnosis means she now actually might be on the path to correctly addressing a problem and potentially improving how she's already accustomed to feeling. I hope that is the right advice.

    I know when you're chronically ill how badly we want concrete diagnoses so we can have clarity but also how scary those concrete diagnoses can feel. Because she knows so little about Lupus, she is really scared and potential diagnosis is carrying a lot of weight.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @littlebird6180 These are such great quotes (you are very wise!) and I totally relate to them. I have multiple autoimmune antibodies that are so all over the map, they do not fit with one clear known diagnosis like lupus vs. multiple overlapping problems. Some days I want a concrete diagnosis more than anything and other days the label does not matter and I just want symptom relief. Best wishes to your friend in finding the right doctors and answers.
     
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  5. charles shepherd

    charles shepherd Senior Member

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    If you are in the UK and have a copy of the MEA purple book you will see that we stress that lupus forms part of the differential diagnosis of ME/CFS - because it has a number of symptoms (fatigue, joint pain, cognitive dysfunction) that can also occur in ME/CFS

    So considering the possibility of lupus should form part of the clinical assessment component of the diagnostic process in ME/CFS - especially where symptoms such as joint pain are present and there is a possibility of lupus being present

    I know of several people who have started off with a diagnosis of ME/CFS and then being found to actually have lupus after being more thoroughly assessed and investigated

    It is possible to have ME/CFS and other medical conditions but it may be more difficult to draw this conclusion where two conditions like lupus and ME/CFS have overlapping clinical features

    This is something that would need to be assessed by an appropriate specialist

    From the clinical assessment section of the MEA purple book:

    Systemic lupus erythematosus: In addition to debilitating fatigue, characteristic symptoms include malar facial rash, photosensitivity, oral ulcers, non-erosive arthritis (symmetrical, polyarticular joint pain with early morning stiffness), pleuritis and pericarditis. Antinuclear antibodies are positive in more than 95% of patients. Raised anti-double stranded DNA antibody titres are found in around 60%.


    MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

    We can send a copy of the MEA purple book to your GP if this would be helpful

    Jonathan may wish to update the basic info on the use of immunological tests

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  6. littlebird6180

    littlebird6180

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    Thank you so much. This is really helpful. We are on the eastern coast of the US (her north, me south). I will pass this information onto her and keep you posted. Of course, I can't speak directly for her but am pretty familiar with her health and don't remember her mentioning any of these: malar facial rash, photosensitivity, oral ulcers, non-erosive arthritis (symmetrical, polyarticular joint pain with early morning stiffness), pleuritis and pericarditis.
     
  7. JoanDublin

    JoanDublin Senior Member

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    Hi there. I also have systemic Lupus, diagnosed now about 12 years ago and after a couple of years of ups and downs and various flare ups I have mostly settled in to a good management of it. Lupus can present very differently in different people so please tell your friend, if she is diagnosed with lupus, not to jump to worst case scenarios.

    You asked if there was a reputable forum for Lupus and I would recommend this one http://www.thelupussite.com/forum/index.php

    Many years ago I was a moderator on that site and I know that it was very keenly moderated to ensure that only correct, good quality information was given to patients and those possibly seeking a diagnosis. Of course I can't vouch for it now but I've no reason to doubt that there has been any change to that tight level of moderation.

    She can seek advice there about upcoming appointments, what to expect, how to prepare, etc etc or indeed anything else relating to the illness.

    You are a good friend and I wish you and your friend all the very best
     
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