Autoimmune Neutropenia
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Hi I've had AN for many years, as far as I have learned there is no cure the only treatment is antibiotics.
I had a bone marrow exploration done some years ago, my bone marrow is working normally but I have built up anti cells that break them up. I've just had a hip replacement, I was very worried about infection as this is a major op regarding the bone. I've come through with no infection and 3 weeks now no walking aids I did my 1st mile no pain no limping.
On my discharge it is written that they gave me 300mg of GCSF I think they were hoping my neutrophils would improve, unfortunately it made no difference so I was discharged with neutrophils 0.14. I was told to keep vigilant and note a change in temp if I should get any sign of infection go to an A&E. In my experience when I have been very ill with an infection no one seems to know what Autoimmune Neutropenia is? that's the problem. I'm sure all of you that have this complaint are fully aware of. I do not have the support of a Haematologist but I do take antibiotics away with me for water infections, chest infections other creams and liquids that help with mouth ulcers.
I just feel with this and my under active thyroid it could be a whole lot worse, so we live with it there is no magic cure, fruit , vegetable or whatever. I do sympathise with all of you. Rachel
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margaret12424 rachel66273
Posted
Hi. Do you have LGLL? (Large granular lymphocytic leukaemia). This is an autoimmune disease affecting neutrophils. Don't worry about the word leukaemia this is an rare but indolent condition. A haematologist could advise whether this is the case; you seem to have had a bone marrow biopsy that usually helps with diagnosis. the main risk is, as you know, picking up infections. If you look at Bloodwise site or look up the world expert Dr Loughran in the US you can find more information. there is also a fb group. Maggie
rachel66273 margaret12424
Posted
good morning many thanks for your message I don't think my blood disorder is any kind of lymphocytic leukaemia
My thyroid was attacked with antibodies who knows why? at the same time my white cells were attacked and this has gone on for a number of years. I have been in situations where I'm in an A&E raging temperature infection spreading like fire , only to be told use this cream if not better in 2- 3 days call your doctor! not many know about Nuetropinia, my doctor surgery called me in for a shingles jab, when I questioned the fact that it is a live virus and my neutrophils are very low will I cope with the infection? from the sister she said ( & why do you think you have this condition) it's in my notes or it should be? she went away to read my notes came back never said sorry just a quick comment I'll put this one back in the fridge!