Not posted in a while but back at work after being off for 6 months with the above blood disorder and getting Neutropenic Sepsis. Neutrophils as low as 0.2 in recent months. Had neupogen injections but they made me so ill, even gave me multiple ulcers in both eyes, although the haematologist said that is not a side effect, but i know, within a week of each injection i got the eye ulcers. They cant find a cause for the neutropenia except that it may be due to the R.A. ive had for the last 20+ years. Had a bone marrow biopsy which did not reveal much except to show immature white blood cells. Steroids did nothing to help either.
My R.A. has not been much of a problem in recent months, but the low white blood cells are a big problem. Terrified of getting an infection in case it turns to sepsis again and in case i lose my job for being off again.
I had a mirena coil fitted 10 years ago, supposed to come out in 5 years but doctor said it could stay in. They cant get it out now, its stuck! May have to have surgery to remove it but they dont know if they should do that because of my low white cells and also thrombocytopenia which means i bleed easily. I wondered if the coil had anything to do with the low neutrophils but the docs say no documentation to say this could be a cause. So now i am waiting for my gynaecologist to speak to my haematologist and rheumatologist to decide if i have the coil removed or not.
Feeling very disheartened, the neutropenia has been going on for over 12 months now and they cant help me because they dont really know why i have it, and I feel constantly tired, lots of infections, mouth ulcers and sores etc etc and now this trouble with the coil.
Just needed a rant with people who know only too well how frustrating these illnesses can be, especially when you cant get a proper diagnosis or treatment. Just want to keep up at work and try to live a "normal" as possible life without the constant significant threat of severe infection. Not a lot to ask.