Whats a girl to do? : So I have been told I have... - LUPUS UK

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Whats a girl to do?

jennyall12 profile image
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So I have been told I have leukopenia and this really sucks. To walk around daily with low immunity and white count,. anyone else in this boat with me?

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jennyall12 profile image
jennyall12
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Sarah_Joy profile image
Sarah_Joy

I don't know much abut leukopenia but I've had neutropenia (low neutrophils) for about 15 years. This was probably the first sign of lupus for me. I still have it and it's stable now but I did pick up every cough, cold and bug going for a while. Getting the yearly flu jab and regular monitoring blood tests were the main things I found I needed to do. Are you seeing a haematologist to keep an eye on your blood condition?

SJ

milkwoman profile image
milkwoman

Interesting that you should post this... My latest bloods (taken on Sept 22) show below range WBC and lymphocytes. Rheumy made a note "slight leukopenia" and we discussed this at yesterday's appt.

She asked how I'd been feeling... In the last 4-5 months, I've been ill quite often, seem to catch anything going around. Nothing too awful, just flu-like symptoms along with fatigue and headache that last a few days (one time a week) then I feel normal again. So, the leukopenia result is making sense. WBC and lymphocytes have never dipped this low, so yes, I am a little worried about it. I also have low compliments (c3and c4). She said it indicates disease activity and may resolve itself.

We are retesting blood in 3 months time and will evaluate at that time. Fingers crossed that WBC count goes back up into normal range and complement levels also increase on their own. Of course, if I start to feel worse in the meantime, I am to contact her and we will test sooner.

I'm already taking the max dose of Plaquenil for my weight/height. Higher dose would jeopardize my eye health and I do not want to risk that. I also would like to avoid prednisone for as long as I am able.

I got the influenza shot (quad virulent intradermal high risk) with no issues. I eat well, take supplements, get as much sleep as I can, and exercise regularly. Just started trying gluten free eating and will see how that goes.

I know how you feel. I feel the same way - nervous that I will catch everything under the sun. I limit my exposure to people, use hand sanitizer and wash my hands often. My friends know that if they are sick to stay away as a "slight cold" can mean a week (or more) of serous illness for me.

So in short, you are not alone. I'm in that boat with you. I find that I keep my sanity by not worrying about things I cannot control. I will worry when I am given a solid reason to do so.

Hang in there.

johare profile image
johare

Hi, I have had low white count across the board for some time. I catch most bugs or they linger. I just try to keep on top of symptoms if I can.

jennyall12 profile image
jennyall12

Do they know whats causin it?

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