View Full Version : Can u have lupus but not show in bloodwork???

06-30-2009, 06:56 PM

I have been off work for almost 2 years and been to many specialists. They thought i had chron's disease however my bowel isn't bad enough for what is going on elsewhere. I have a rash that comes and goes on my cheeks and nose, extreeeemmmmeeee fatigue, sores in my mouth, joint pain esp in my wrists and hands and knees, if i go in the sun (even briefly) i break out in a rash and then feel really ill later. I get unexplained fevers. Severe migraines, my white blood cells range from too high to too low. I now have an inflammed liver and my nerves in my left arm are acting up and recently i get pains in my chest that are worse if i try to take a breath. Im only 35 and i feel like im falling apart. I have been on prednisone (100 mg) on and off for 2 years which has caused a big 70lb weight gain however, on the steriods is the the only time that i feel half normal again as the joint pain and GI suff, rash etc go away (unfortunately im still tired then but not as bad).......i am currently off the steriods and the immunologist said i have a good chance of having lupus but she is watching me for now and doesn't want to label me wrong. My aunt (mothers sister) also has lupus. She is hesitant because it doesn't show in the lupus blood tests. I am currently on Immuran (immune suppressant) and i just started plaquenil. I am also on meds for migraines since they seem to come daily at times. As well since this all started i am diabetic and have to inject insulin as the prednisone sent my blood sugars soaring which put me in the hospital...........

Sorry to go on i just want to know what is wrong so i can do something i feel like a hypo all the time because everything is going wrong in my body. Does this sound like lupus or am i taking all these meds for no reason?????????????????? The canadian med system sucks it took me 9 months just to get into the immunologist.

Thanks for listening


06-30-2009, 07:57 PM
Welcome to our site, I hope you will find all the answers you are seeking as well as the support you may need. Did they run your bloodwork for Lupus panel after you were started on prednisone? In my case my lab work did not conclusively show Lupus while I was taking the prednisone.

06-30-2009, 08:06 PM
I have had bloodwork both on and off the prednisone and the ANA results were always negative but i have been tested for everything else including MS when i started losing the feeling in my limbs.


07-01-2009, 01:49 AM
You sound like just like you belong here. Everything you describe including the failure to ascertain what is wrong is what others experience too. I like your doctor - she is prescribing what is needed but is also trying to be definitive.

07-01-2009, 04:02 AM
It sounds like Lupus to me, you have a lot of the same symptoms that all of us have :( The unfortunate thing about Lupus is that its very hard to diagnose and it took months for them to figure out what was wrong with me. I know Lupus is bad and sometimes it just rains on our parade, but try to stay positve because when you're sad or depressed it makes your symptoms flare. If you're an outdoors kinda gal I strongly recommend you put sunscreen all over every inch of your body. I almost never get the rash too. The highest s[f you can find, Neutrogena has a spf 80 that I use year around. I never get sick in the sun or heat and if you know you'll be out for a while take a hat. It does work. Welcome to the group BIG BIG HUGS and SMILES. Let me know how the sunscreen works out

07-01-2009, 06:00 AM
Terry..in short, yes to your question can you have lupus and not show up in your blood tests.

Many of your symptoms are what I have or had...I am diagnosed with Lupus, Sjogren's Syndrome, Fibro and some other miscellaneous cronies that tote along.

Note lab work is only part of the puzzle for a Lupus diagnose the other part is family history and accumulative symptoms.

Laboratory tests alone cannot give a definite "yes" or "no" answer.

No single laboratory test can determine whether a person has lupus.
Test results that suggest lupus can be due to other illnesses, or can even be seen in healthy people.
A test result may be positive one time and negative another time.
Different laboratories may produce different test result.

I would suggest, though it takes awhile to see specialist in Canada I would make an appointment for a second opinion. Just to get another doctors perspective on in. You don't need a hard diagnose to receive treatment..but maybe they provide different information and perhaps a better pill regimen to control your symptoms better. Maybe it just needs a tweaking with the doses...maybe less prednisone since starting Plaquenil.

Keep looking for your wellness...hugs.

07-01-2009, 08:27 AM
My lupus did not show up in my blood work for about a year (try changing rheumatologists) I only tested positive on the ANA.


07-01-2009, 09:00 AM
My dr. had to send my bloodwork to lab in ca that specializes in autoimmune disease. that when i got my dign. of having it. like oluwa said it doens't always show up on labs and different labs use different critiera for testing.

it sounds like lupus to me and if already in family i would go more towards that.

you need another dr. so maybe the new one your going to will be better.

welcome to our site everyone here is great so vent or ask questions we are here for you.:laugh:

07-01-2009, 09:04 AM
Your symptoms are sooo simular to mine! I was dx'd with Crohn's 5 years ago then I did't have it then I did now I don't, so they took me off all my medications and poof, the rashes, the joint pains, the migraines, the unexplained fevers. I had a positive ANA and I thought ohh good now we can get answers but the las two times they ran it it was negative. Mt PCP put me back on Imuran (an immune suppressant) and my sun sensitivity and various rashes cleared up with two weeks. I still have the sever muscle pain, extreme exhaustion, and unexplained fevers, but at least i can enjoy the summer! I am going to Oregon Health Science Univ. next week and hopefully they can come up with some answers and a DX for me. In the meantime hang in there and keep on fighting for answers!


07-01-2009, 09:07 AM
The following are tests, medical history that are used to assist in the diagnosis of Lupus. The bold text are the ones you had mentioned Day in your post....Love, Oluwa.

1. Malar rash Fixed erythema, flat or raised, over the malar eminences, tending to spare the nasolabial folds

2. Discoid rash Erythematous raised patches with adherent keratotic scaling and follicular plugging; atrophic scarring may occur in older lesions

3. Photosensitivity Skin rash as a result of unusual reaction to sunlight, by patient history or physician observation

4. Oral ulcers Oral or nasopharyngeal ulceration, usually painless, observed by physician

5. Arthritis Nonerosive arthritis involving 2 or more peripheral joints, characterized by tenderness, swelling, or effusion

6. Serositis a) Pleuritis--convincing history of pleuritic pain or rubbing heard by a physician or evidence of pleural effusion OR b) Pericarditis--documented by ECG or rub or evidence of pericardial effusion

7. Renal disorder a) Persistent proteinuria greater than 0.5 grams per day or grater than 3+ if quantitation not performed OR b) Cellular casts--may be red cell, hemoglobin, granular, tubular, or mixed

8. Neurologic disorder a) Seizures--in the absence of offending drugs or known metabolic derangements; e.g., uremia, ketoacidosis, or electrolyte imbalance OR b) Psychosis--in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance

9. Hematologic disorder a) Hemolytic anemia--with reticulocytosis OR b) Leukopenia--less than 4,000/mm<>3<> total on 2 or more occasions OR c) Lyphopenia--less than 1,500/mm<>3<> on 2 or more occasions OR d) Thrombocytopenia--less than 100,000/mm<>3<> in the absence of offending drugs. Low white blood cell count, or low platelet count

10. Immunologic disorder a) Positive LE cell preparation OR b) Anti-DNA: antibody to native DNA in abnormal titer OR c) Anti-Sm: presence of antibody to Sm nuclear antigen OR d) False positive serologic test for syphilis known to be positive for at least 6 months and confirmed by Treponema pallidum immobilization or fluorescent treponemal antibody absorption test

11. Antinuclear antibody An abnormal titer of antinuclear antibody by immunofluorescence or an equivalent assay at any point in time and in the absence of drugs known to be associated with "drug-induced lupus" syndrome

The most common symptoms..not all though, of lupus, which are the same for females and males, are:

extreme fatigue (tiredness)
painful or swollen joints
anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
swelling (edema) in feet, legs, hands, and/or around eyes
pain in chest on deep breathing (pleurisy)
butterfly-shaped rash across cheeks and nose
sun- or light-sensitivity (photosensitivity)
hair loss
abnormal blood clotting
fingers turning white and/or blue when cold (Raynaudís phenomenon)
mouth or nose ulcers

Organ involvement - skin, liver and GI.
Another autoimmune disease..Diabetes Type II
Family history of autoimmune disease.

07-01-2009, 10:53 AM
I have a few of the other symptoms too, i have been getting mouth ulcers for at least 8 yrs now, i have the sun sensitivity, the discoid rash on my upper arms which has actually caused scarring. i also have no feeling in half my left arm (i did have this down the left side of my body but my leg and face come and go) my ulnar nerve is pinched and the specialist said the inflamation can be caused from lupus as well. the dr stated i have 5 of the 11 criteria she would just like to see it in my blood as well........

unfortunately i have a sick child, my son who is almost 12 has bipolar and in canada child mental health care is really poor so my stress level is to the max as my son has been put in a treatment home. and i do not handle stress well at all. I have had something wrong with me since college but was told it was IBS and then later colitis and then chron's.....now they belive its lupus. i have been sick on and off since i was around 20 but the last 2 years it will not settle down, the only time i had some settling was on prednisone but as soon as i wean off it the symptoms are back and it is definately not something i want to stay on forever.

I'm just frustrated for answers in september it will be 2 yrs since i was really ill and had to leave work as i was calling in sick way to often. I would love to go back to work but i never can make plans for anything cause i never know how i will feel.......

this site has helped some already, i never put the car ride thing together till i read what others said, or the sulpha drug thing (i get severely ill) i should send my husband on here this is also frustrating for him too we are at home all the time and don't go out often im afraid to get sick or i do get sick alot of times when we do go out. maybe he will see im not just making excuses

anyway enough whinning on my part im really not this much of a downer lol thankyou for the responses its nice talking to someone who understands

ohhhhh one good thing came out of this, i quit smoking it will be 4 months tomorrow!!!!!!!!!!!!! Hubby too!!!

07-01-2009, 11:31 AM
Hi Terry,

Welcome to our group. I'm Rob, and I was diagnosed with Systemic Lupus five years ago. I can't really add to the excellent advice you've already received here, but I will say that you have many of the same symptoms I have. It sure sounds like you have Lupus to me. I hope you can find the answers you need. I have a good friend who is Bipolar, and I know how difficult that can be to live with for the person who has it, as well as their family and friends. I can just imagine it would be even more difficult if it is your own child who is dealing with it. Anyway, welcome, and please make yourself at home here.


P.S. There's no such thing as "whining" here. You talk about what you need to and don't worry about it. And you are not a downer!

07-01-2009, 11:39 AM
Sure sounds like lupus - and typically only 4 of the 11 criteria are needed to diagnose. You've gotten some great advice here already, and more will come as you need it, or just need a place to vent. Welcome!

07-01-2009, 12:45 PM
WELCOME TERRY and YES you have come to the right place!:yes: I am 36 (almost 37) and i have EVERY symptom you have and more as well. I AM STILL going through drs. Its sad, ive discovered that MOST drs want to ONLY go off of your blood work and thats NOT how LUPUS works. Like the others said, blood work can be All over the place, mine has from as far back as 11 yrs ago. The drs dont want to consider all of that ALONG with all of my other symptoms, they are too lazy to put in the effort of takeing care of you. I hope we can help you through this!!!! GENTLE HUGS!!! XXX

07-01-2009, 01:38 PM
Terry, ((((hugs)))) and welcome. I've been relying on this site for over a year now, and finally participating recently...and you've come to the sweetest spot on the net with so much support and help. You are one of many waiting on a diagnosis and are in good company. I don't know what I'd do without this gang!

Lab work is a tricky thing. I'm starting to understand the real picture about lab work. The way my pcp explains...there is a lot that can go wrong during testing, drugs in the body can make tests off... and labs, in her opinion, shouldn't be the sole source of diagnosis. Unfortunately doctors rely heavily on it. My tests in the beginning showed high numbers for Lupus and Sjogren's and I had many symptoms...and the visible rash, but then the labs went negative so the diagnosis was put on hold by the rheumys. Or I should say I received the diagnosis of UCTD, MCTD, and recently angioedema and fibro. The more docs I see, the more to put to the diagnosis collection.

An example of labs going wrong that I experienced recently is the test for angioedema. If the blood is not kept a particular temperature it goofs the testing. It's a very sensitive test. I had one test showing evidence for it and one negative. A so called specialist's answer to this problem is to do the labs again and "break the tie"...her very words...and I said no thanks. We're going broke over all these tests that aren't helping with a diagnosis.

It boggles my mind...I have so many symptoms of this...my sister has tested for it, every marker for it but one....autoimmune disease runs in my family...my initial tests pointed to Lupus and/or Sjogrens...but no, we can't use any of that in the diagnosing process. However, we will roll the dice with lab tests for a diagnosis of angioedema??? Third time's a charm? Is this science? I don't think so.

I agree you should go ahead and make another appt with a different doctor and see if you can find reviews for them first. It's hard to find but it is possible there may be some help. You never know what may show up in a search engine when you put that doctor's name in there.

I'm so sorry about your son...that has got to be a very heart wrenching experience and my heart goes out to all of you. You'll all be in my prayers for healing, happiness, and lifelong health.

God bless!