So after a very difficult period (since January) my body finally gave in and lupus came out to play... or maybe not!!
According to consultant even though I am showing classic signs of flare, I have a chest infection that after three courses of serious antibiotics, being on and off MMF like a yo yo and taking Prednisolone like smarties will not budge! I now have to face up to the prospect that there is the distinct possibility of further damage to my lungs, but my bloods are stable therefore the problems I am having are categorically NOT lupus...
Then what the hell is causing it then???
Hoping that there may be someone out there that may be able to take a look at these results and see if there is anything that has in fact been missed please? I have no idea what to look for.
Many thanks in advance
Sam
Written by
Silvermyst
To view profiles and participate in discussions please or .
Am sure you’ll get great replies...but, as a starter, i’ll have a little go at replying
Just a long shot, but this turned out to be at the root of my weird lifelong infections thing...which has nothing to do with my immunosuppression meds:
Do you know your immunoglobulin levels (IgG, IgA, IgM)? If your levels, especially IgG & IgA, are low this may be significant and go some way towards helping to understand complex persistence pattern respiratory infections.
My WBC count (especially neutrophils) shoot high when i’ve a respiratory infection (indeed, these are high right now due to lifelong chronic sinusitis flaring after pneumonia broke through immunology’s daily antibiotics last spring). The other day my immunology chief told me point blank that in my case “signs of active infection” is the correct interpretation of increased WBC & neutrophils (i have chronic lymphopenia, so even lymphocytes going back up into normal range indicates active infectiion)
I’m on myco too (+ hydroxy & pred) and rheumatology + immunology are certain these are irrelevant to my hypogammaglobulinaemia (chronically below range IgG, IgA, IgM). these deficiencies are recorded in my earliest immunoglobulin results, way way back before i started immunosuppression meds
Thank you but no, unfortunately I do not have these results. May ask if they can check though now you have mentioned it. Do you know the reason why that's the case please? I'm interested to understand what the cause and diagnosis would be so i can mention it to hospital. Thank you.
It’s unusual, but not unknown for some patients to be diagnosed with simultaneous autoimmunity (eg SLE) & immunodeficiency (eg hypogammaglobulinaemia) which is not caused by immunosuppression meds. I am one such patient, and i know of several others.
If you’re interested in more info, probably better to learn from real experts rather than me. This support group has helped me greatly to understand my case:
You’re welcome...may be useful, but you’ll at least learn more about predisposition to persistent infections....Good Luck...hope you’ll let us know how things go for you XO
I'm also a little baffled by your results. Not because of what the list you have shared shows (although I might have expected a higher ESR), but because the results for what I thought were the most direct markers of autoimmune activity seem to be absent.
i.e. have you not been tested for ANA, ds-DNA, Rheumatoid Factor (IgM v IgG), anti-Ro, C3 and C4.....?
I'm not at all expert in this, but those are the first things I look for in my bloods....x
I'm mystified as to why that set of results has been flagged as borderline/see doctor. There is only really one result that is out of range - the neutrophils are high and that is the reason the white cell count is high and that is to be expected if you have been on pred (it sends the neutrophils up and that may be the way pred works). Your haematocrit and haemoglobin are at the top end of normal - but they are no different from mine my entire life! I'm surprised the ESR/CRP aren't raised, especially if you have lung problems but some people don't "mount the acute phase response" as they so delightfully put it!
As the others have said - there are a lot of things that should be checked that aren't on there. That is a VERY basic set of tests. It is possible that they were done in a different lab and haven't come back yet - not all labs do all tests, especially the specialist ones. So did you have loads of bottles of blood taken at the time? In my day that would have used 3 bottles - a small red topped one (haematology), a plain one for serum (no idea what colour code these days) and an (orange?) one for plasma, they aren't so much different here though.
I agree with whisperit, if you are wondering whether your lupus is active, you (your doctor) should check more specific bloods. ESR and CRP are non specific markers of inflammation. My rheumy goes by my C3 and C4 levels, and anti-dsDNA. I rarely have my ESR tested any more. Also, MMF can make you more prone to infections, so that is something to consider as well.
One thing I learned from having autoimmune diseases for 50 years (my entire life) is that there really is just autoimmune disease. Doctors use a list of symptoms to "diagnose specific illnesses" so they fit into categories. I'm sure you've noticed that most autoimmune diseases are treated with the same medications. If rheumatologists would treat the root cause of autoimmune disease, then all of these illnesses would benefit.
I'm sorry that I don't have an answer to your question. I had to use homeopathic treatments when I had no health insurance. Turns out, that was very helpful for me. I hope you can get the help you need.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can anyone tell me what "normal" feeling is?
DIAGNOSIS- FM Anyone?!
Discoid lupus help please!
Recently Diagnosed with SLE and looking for help.
