Why

[luupysue]

My near neutrophils are down to 0.3 from 2.9 (highest ever). No signs of infection. Azathioprine stopped 2 weeks ago as it had dropped below 1.4,.Seeing Dr's every 2 days, have just moved house so new gp has no history as yet. Also moved 285 miles away from last hospital so not been referred to new rheumatology department. Really worried.

[Freckle1000]

I'm hanging on tenderhooks myself due to low lymphocytes ( and at one stage - neutrophils. ) Trying to chase down my specialist to see what to do about it.

Initially she just reduced my complementary immuno - suppression ( mycophenolate ) and upped the prednisolone a bit - but it hasn't quite worked and the immune system is still floundering a bit.

I probably need a further reduction of immunosupression - as they checked my C3 & C4 which ( I believe ? ) shows wether the immune system is cannibilising itself - they assured me this wasn't happening - so for me it was a medication reduction needed as apposed to an increase.

Just my humble opinion - but I think you need to make finding a specialist you're first priority no matter what obstacles you have.

Youre neurtophils are VERY low. The healthy rate here ( Australia - is 2.0 - 8.0) If you absolutely can't find help - perhaps get yourself to the nearest Hospital ( but try and avoid germs )......

Ring you're old GP & specialist - to try and figure out whether you need to up - or lower you're meds.

They also might need to see wether a sign of an unchecked infection ?? that you might not be aware of.

Whatever it is - get some medical help now - and do your best to rest to reduce strain and stress.

Don't wait.

[Lupiknits in reply to Freckle1000]

Good advice here. I think first call needs to be your old GP who will certainly understand and may be able to expedite things x

[luupysue in reply to Lupiknits]

Thank you I've given them my old Dr's details and old luppy nurses number now.

[Freckle1000 in reply to luupysue]

Glad to hear you're chasing it all up. If you have trouble seeing a Doctor - I'm hoping people at this site - closer to where you are - can offer some good advice.

Don't give up until you're talking to someone qualified enough to deal with it.

[overnighthearingloss]

Years back when I was on a whole load of immune suppressants I had a renal crisis. I was admitted to a hospital that was a lupus centre of excellence. During my many tests it was discovered that my neutrophils were incredibly low.

I was moved to an isolation room. People could only enter with mask and gloves.

Regardless of how you may feel within yourself you may be putting yourself in extreme danger.

It was such a long time ago for me and I obviously was already ill and didn't notice any particular difference when they said my neutrophils were extremely low. But with resources always extremely stretched it must have been serious for them to put me in isolation.

Your life may be at risk if you or somebody doesn't take action

[luupysue in reply to overnighthearingloss]

I will most certainly get help, thank you for letting me see how important it is.

[Melba1 in reply to luupysue]

Yes me too when my neutrophils were 0.3. I was admitted and put in isolation and they went down to 0.1. I was very unwell with high fever, confusion, vomiting etc so if you have no symptoms (and most won’t with low neutrophils unless you get an infection) they may be just keeping you away from infection by not admitting you but you do need to be very careful with avoiding infection (from other people and food sources - they had me on a restricted neutropenia diet , no salads, pate, unpasteurised things I think) with neutrophils below 0.5 as will struggle to fight infections. There is treatment they can give to get some neutrophils growing if it goes on much longer.

Hope you get it sorted. Some people’s just bounce back, mine went from 0.1 to 0.5 in a week then increased and it’s never gone that low again even on cyclophosphamide.

Good luck x