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Regular Member

Date Joined Oct 2007
Total Posts : 61
   Posted 4/5/2008 7:26 AM (GMT -6)   
Hi All,
Have a few questions about my CBC....I was diagnosed with SLE Lupus in October 07.At the onset of some symptoms(migratory myalgia and arthralgia and some fatigue) my WBC was low and with each MD visit it continued to go down.It went as low as 2.1 and my HGB,HCT and RBC's were low too.My Rheumatologist said but maybe i misunderstood;that the WBC's will always be low.She said that my overall CBC will always be low with Lupus.
I'm on the Plaquinel for about 3 months now and just went to the Rhuematologist two days ago and my CBC was TOTALLY NORMAL.My white count is up to 5 now.Nothing came up abnormal.I asked my Rhuemy if this was due to the Plaquinel and she said ''NO'' but might be because i have less inflammation?? Can someone help me understand this? Do most people with Lupus have low WBC's all the time or do they go up and down with flares ect?? I was told by a co-worker with Lupus that her WBC is always low.
The reason i ask is because the three Rheumy's i saw have conflicting diagnosis for said and wrote in his report to my primary MD that i have ''No connective tissue disease''.The second said I have SLE Lupus and the last one said '' He's not convinced I have Lupus'' The last Rheumy said i also dont have enough of a ''clinical picture'' for Lupus.So i'm still very confused....can someone shed some light on this for me about the CBC counts and Lupus?
Thanks so much and feedback would be appreciated.
Fran Z

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 4/5/2008 8:09 AM (GMT -6)   
Hi (((( Fran )))), you know this disease is not the same for everyone but I can tell you that my WBC and RBC have been low for some time now, others are low too but not always. My rheumy said it tells her my lupus is "stirring around" or active. I am sure there will be others along shortly to answer your questions. I hope you get the answers you are looking for. Take care and keep us updated.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/5/2008 9:46 AM (GMT -6)   
Hi Fran,
Yes, some chronic diseases will often present low WBC counts.  The condition is called neutropenia. I have it. My WBC count fluctuates with the disease process.  I have times when it's low, like you, and then other times when it's perfectly normal. All depends on how active your lupus is.
I would keep continue seeing your rheumy and keep that diary of symptoms,etc.  Lupus is such a pain in the you-know-what.  It will present symptoms and then all of a sudden not present any.  If you feel uncomfortable with your rheumy, you need to see someone else.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Miss Magnolia
Regular Member

Date Joined Nov 2007
Total Posts : 95
   Posted 4/5/2008 12:53 PM (GMT -6)   

I haven't posted on here in awhile as my rheumy first said I had lupus then said I didn't, that I have Fibromyalgia.  He is now out on what was supposed to be a 3 month medical leave, which has been extended. I spoke with the nurse para legal at my office who reviewed my test results and she still thinks I have lupus. I am just having a bad day and now I have had a strange rash on the palms of my hands that itch like crazy for about 2 weeks. The crazy symptoms!!!

Because my doctor is still out on medical leave (he is not an older man) and because of not being able to see another doctor at this clinic, I am changing rheumies.  One of the ladies who always sits in back of me in church recommended her rheumy so I have made an appointment with him. We will see.

I have read a number of books on lupus and fibro and isn't it strange the number of conflicting opinions we get.

Mariepoms, I understand and feel your frustration. I think many people here have lived through it.  You are not well to begin with, and then you have all this to deal with, it's just overwhelming. Hugs to you honey and know you are not alone.   



Fibro,Arthritis, Hypertention, Depression, sleep apnea, IBS.
Tested postive for Lupus, but then diagnosed with Fibro.
Lyrica, Prilosec, Estradiol, Xanax, Lexapro, Lisnopril,Atenolol, Promethazine DM,Hyoscyamine

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 4/5/2008 2:49 PM (GMT -6)   
Before i had my transplant in '06 I had problems with my blood counts mostly red blood cells. My were always low, the docs had me on procrit, which you inject subq into your arms, legs, or stomach, it kept my levels within limits and when they dipped I would give myself another shot. (i had my doc show me how to do it, so that i could just inject myself rather then always going to the clinic to get the shot, they gave me syringes and alcohol swabs) but since the transplant all my blood counts are fine unless i'm sick, then my white blood cells are up.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain

New Member

Date Joined Feb 2008
Total Posts : 8
   Posted 4/5/2008 4:40 PM (GMT -6)   



       In answer to your concern about white count being others have explained this is part of what we have to learn about.In my case unfortunately in 2005 underwent lumpectomy---radiation ...sailed thru this and not until last summer did I get a call re my blood work.wbc was 2100 and platelets 70.000( normal 150,00--400,000) Short story many and I mean many DRs..tests scans etc saw a rheumo and had been very ill for 5 mths and he confirmed lupus ...I had asked my gp to give me the results for 3 yrs and found out there were many irregularities....B 12 was one of them so getting my head balanced has become a full time job

      I understand the frustration especially since I would have done a lot of things differently had someone noticed the abnormal blood. I am getting past the anger but I go everywhere ready with my questions and the answers have to make sense ---or here comes another question---Recently started on Prednisone and it is only a short course but to be able to do a few things is a blessing......A note about the platelets----my friends who ke pt me a bit sane have a joke----watch she doesn't touch the sharp objects---without them I am not sure what I would have done. Keep positive people around you and remember you are in control not this pesky lupus...Keeping you in my thoughts and prayers



Regular Member

Date Joined Oct 2007
Total Posts : 61
   Posted 4/6/2008 6:30 AM (GMT -6)   

Thank you for the replies.I truly appreciate the feedback.I had some other bloods drawn last week so lets see what that shows.I know she drew another ANA and C-complement,C 3 and 4 and some others...

I have a question for you Ginny...what symptoms,if any,did you have with the Libman Sach's and vasculitus?? How is it diagnosed??


Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 4/6/2008 10:15 AM (GMT -6)   
Low blood counts of WBC, RBC and platelets are common with lupus and some other AI diseases.  Mine were low for 15 years before the first flare.
Here is a good site with a list of symptoms and overview of blood tests and results.
Your rheumys are not really disagreeing they just don't have enough to make a clinical diagnosis or they are not experienced enough with AI diseases to make a diagnosis.  It is not always easy to get a diagnosis and some suffer through months or years of uncertainty.  In time your diagnosis will be clear.  Keep a log of your symptoms and test results that you can show to your doctors.  I keep one in an excel spreadsheet.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/6/2008 11:47 AM (GMT -6)   
  Mine fluctuates also with disease activity.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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