Freaking out.

[jennyall12]

I was diagnosed with lupus about seven years ago. I was on plaqunil for about seven years and then went for labs and my wbc dropped from 3.5 to 1.5. The doc pulled me off the plaqunil and its been 5 months and the white count has only increased a couple points so he referred me to a hemotologist. I am nervous! Please help!

[dgleds]

Hi! Jennyall12,

I thought Plaquinil was suppose to help with those things, not make them worse....I was on plaquinil for about 2 years, then as my lupus is suppose to be mild, I told Doc i didnt want to take it anymore...so far so good, and its been 2 years...I think plaquinil has good and bad things that can be said about it...Here the gp seem so reluctant to investigate anything lately (Canada/BC)....I do remember when i was first on plaquinil i got bad headaches, and was peeing brown urine...and a few things i cant remember...Things over lap, and i never know if it was some stuff from post menopause, hyp0thyroid, or in fact mild lupus....or the meds. I hope all goes well for you at the hemotologist...

[Fennella02]

Hi. When you say that your WBC has only increased a couple of points, do you mean it's still under 2 or its back nearer 3.5? Xx

[jennyall12 in reply to Fennella02]

Oh it has only increased a couple points and still barely under 2

[Fennella02 in reply to jennyall12]

Your GP is being very thorough by referring you to haematology which is reassuring. Mine is always low too but sits at 2 or just above.. Try not to worry, they're watching out for you x

[jennyall12 in reply to Fennella02]

Really Clare? What do they think is causing it to be low? Thanks for responding by the way : )

[Fennella02 in reply to jennyall12]

Hi again. Mine is a fairly reliable indicator of disease activity and it doesn't bother me at all anymore. The intention was that DMARDS would cause it to rise but it hasn't happened. Hopefully the haematologist will put your mind at ease - please keep us posted X

[imzi]

Hi

My wbc has always been low but recently has dropped a fair bit but the greatest concern was my platelet count this was when haematology consultation came in and suggested I was put on prednislone. My platelet count has increased however my wbc was still on the low side (I was on azathioprine and plaqunil too) I had to stop the aza for a bit to see if it brought my wbc which it didn't. my rheumy now thinks it is the lupus that's causing the low wbc not the medication.

Hope everything goes ok at haematology, keep us updated!

I. x

[Barnclown]

Hello Jenny...am so glad you've got these great replies.

I think I can imagine how worried you're feeling...2 years or so ago, rheumatology stopped my daily hydroxy dose for 5 months due to sinister blood results...and referred me to immunology (because although my lymphocytes were below normal (making my WBC low), and so were my immunoglobulins G,A,M).

When my blood levels didn't improve without hydroxy, I was allowed to take it daily again (yay). Meanwhile, immunology has been investigating the causes underlying these deficiencies....and helping me a lot...there is no sign I'll be discharged from immunology clinic, ever.

So, I too think it's really good your Consultant is stepping up and has referred you to haematology...

Hang on in there...try to take this "1 day @ a time"...and please keep us posted...am so glad you're here

🍀🍀🍀🍀 coco

[Fennella02 in reply to Barnclown]

Coco, I'm feeling neglected! My GP and Rheumy frown about my low results every month but have never thought of referring me to immunology. Xx

[Barnclown in reply to Fennella02]

🙋 I think it's the below range immunoglobulins G,A,M that were sinister enough to mean I had to be referred to immunology 2 1/2 years ago...at the time of her referral, my rheumy actually wrote to my gp & me ordering a lot of special blood & urine tests related to cancer of the bone. Which was scary! But good forum friends here helped me keep calm!

You probably know that long standing below range lymphocytes can be indicators of SLE inflammatory process. Mine have been just below normal range for many years. But they haven't gone lower since I started on lupus meds 6 years ago.

Actually my lymphocytes have mostly been "just" within normal range since I started on immunology's daily antibiotics over a year ago. My lymphopenia was mentioned in the letter of referral rheumatology wrote to immunology, but the main reason I'm now a regular @ immunology clinic is the chronic, longstanding hypogammaglobulinaemia (Primary Immunodeficiency) bone marrow dysfunction. And this is probably why I'm seroneg: the theory is that my bone marrow function is so poor I can't make antibodies.

Does that make sense? 🍀😘

[Barbara17]

Hello, Jenny. Try not to worry. A couple of years ago, during a flare, my wbc dropped to 0.65. Its gradually increased and is now about 3. Since I was diagnosed and they started checking this I've always had a low wbc and I am still taking hydroxy every day. Anything over 3 is a good score for me. Actually, thinking back, I'm sure the dermatologist thought that the hydroxy would help matters. Let us all know how things go at haematology. Love xx

[jennyall12]

Wow you guys are amazing! Thank you SO much for the responses. : ) SO it sounds like what I am experiencing is fairly common?! I am so happy I joined here and look forward to getting to know you all!

[Chanpreet_Walia LUPUS UK]

Hi Jennyall12,

If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can speak to over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a local contact to speak to, you can email me at [e-mail]

Good luck with your appointment, let us know how you get on.

[jennyall12 in reply to Chanpreet_Walia]

Thanks, do you have lupus as well?

[Chanpreet_Walia LUPUS UK in reply to jennyall12]

Hi Jennyall12,

You are most welcome. No, I do not have lupus myself.