Hi - been diagnosed with Lupus and associated conditions for Approx. 4 years and whilst it has been quite life changing, I know I have been lucky in comparison to many.
I am having flare up currently (fatigue and cognitive function/depression) being my bigger problems and most recent blood tests show white blood cell count amongst other things.
I take a Hydroxychloroquine, an antidepressant, and Vitamin D - was going to start mycophenolate but the low WBC has prevented this. So I will be starting Prednisolone shortly.
Does anyone have any suggestions for how else to raise your WBC or anything I can be doing to help myself/eating etc?
Thank you in advance - just joined this community so I hope this is an OK post.
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chloeabradley
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This sort of WBC problem is something quite a few of us have to sort out
Am sure you'll get some great replies...how low is your WBC reading & how consistently + long has it been this low?
My cautious inclination is to respect your consultant's decision to delay trying myco....but I would continue to question the logic behind his/her approach to the issues involved in designing your treatment plan
my version of WBC probs is chronic lymphopenia: my WBC count is just in normal range, but lymphocytes are always just below normal range. There doesn't seem to be anything we can do about this, so we just watch all my WBC results closely via 2 monthly blood tests. And I am conscientious about lifestyle management 😏
I have been on daily myco (although only at the relatively low dose of 1000mg per day) for several years now, in a bespoke combined therapy treatment plan alongside daily hydroxy, low dose pred & amitrip, and also daily prophylactic antibiotics ongoing...all that seems to be helping me a lot so far so good...it's taken rheumatology & immunology 5 years to figure out that this therapeutic combination is right for me 😉
Will be interested to read your replies as they come in
Thank you so much for replying - it is so useful to understand more about the combinations of drugs other people are taking and their experiences. Appreciating that it will be different for everyone suffering from the different aspects and severity of Lupus - but it is just helpful knowing you are not alone and makes it feel a bit more normal. Sometimes when I am talking to my husband about it can see him looking a bit freaked out!
My WBC is 2.68, neutrophils 1.34, and lymphocytes 0.80. I have to confess I don't know how this stacks up or how this may have changed from previous tests as its the first time I have seen the slip from the hospital who sent me the GP's version of the letter by accident this time. So the other important thing I have taken from your reply is to get these stats myself each time so that I can monitor the changes myself. Also I have only been having blood tests twice a year maximum so maybe I should ask for them more regularly.
Spot on! I totally agree! E.g. my lupus & Vasculitis clinic has me keep a bloods result & meds taken record booklet...I have to get printouts of all my regular GP-processed lupus monitoring blood tests as they come in & enter the results in my booklet. This is extra important because my GP & local bloods lab are in a different NHS trust from the big teaching hospital where I attend lupus & Vasculitis clinic
I can understand your consultant's caution: Those results are significantly low by the normal ranges we use at my clinic:
WBC 4-11
Lymphocytes 1.5-4.0
Neutrophils 2-7.5
Both the intervals at which blood is tested & the individual tests done vary depending on various factors inc our version of immune dysfunction, our meds etc. So, discuss this with your consultant
Welcome to the LUPUS UK community here on HealthUnlocked.
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Thank you - this is really useful and a good reminder that a big packet of crisps and a glass of wine may feel like a big hug but isn't helping! Well not every night. Seriously - it has made me focus on some food groups I should be including more of. Thank you
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Just to reassure you that my WBC sits at around 2.3 - 2.5 and has done for several years. This is seen as a feature of my disease so I was started on Mycophenolate in the hope of raising it. That said, my immune system is strong (very!) so I don't pick up lots of infections. I think your consultant must have good reason for his decision as they are usually keen to keep steroid use to a minimum.
One other thing - my B12 has nudged downwards over the past couple of years and I had the 6 loading doses a few months ago. These do seem to have had some good effect on my WBC albeit only slight.
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