I can tell you that I've have the worst year of my life and although I seem "normal" and back to myself , I'm far from it. My daughter Ahdralisee was still born at 24 weeks via D&E because of IUGR due to my lupus in March 2010 . Very early in my pregnancy I began spilling protein, it got worse and then got better some but still something took her away from us. Only one of the tests for blood clotting was positive and then weeks after her birth nothing was positive. My protein levels dropped dramatically and now I spill less than a half a gram of protein if that when they test.

I had an appointment yesterday with a new fellow , he felt I was doing great and could see me in 6 months. Then he grabs one of the "big" doctors, he for some reasons would like to consider a biopsy and place me on Cyclophosphamide (Cytoxan) .

He feels I'm in the very early stage of this kidney problem and thinks it would help us have a successful pregnancy. I don't feel that way. I want my husband and I to continue to ttc'ing, my rheumy is on board with us trying. We didn't feel my kidneys were the problem during the pregnancy but something to do with my blood clotting and have made a plan to use heparin .

I'm on 400 mg of Plaqunil, 5mg of lisinopril (my bp is always awesome 100/59 yesterday) and 5 mg of prednisone which we are tapering now.

I just feel as though this is not warranted yet. I'm so lost and worried now. Like my life is no longer my own, I just can't get a few months of peace and no torture . I feel like this year I went through torture and unexplainable amounts of pain and suffering. Right now more than anything I'd like to focus on losing some weight and my emotional well-being.

If I decide to get the biopsy at some point, what is it like? I'm a plus size woman ,so I'm worried that will make things more difficult and more painful. My mom is my life-line and seriously they'd have to almost put me under to get calm enough to do this without her by my side.

Also for those that have taken Cyclophosphamide (Cytoxan) , my doctors know that pregnancy is important to my husband and I . I do not take anything without researching it throughly, this medication can cause sterility. That makes me very scared to take it. Now I know these percertages of people but I get scared because I myself am a "rarity" when it comes to medical things. Still's disease morphing in lupus is rare, some of my medication allergies are rare, I've had chicken pox three times in my life "rare"...so when I hear the word rare yeah red flags go off....

Also I already have a weak immune system and get sick alot from others, I'm allergic to the flu-shots...so I'm like open territory for germs.

Okay...wow, that is alot to take in . I guess I'm holding alot of this inside with no one to ask as I'm the only one in my family with problems like this . I'm glad I've found this site.

I hope I can learn alot from everyone here, I've read quite a few post and you all are so strong...I hope I can get to that point.

Thanks for reading this.

p.s soo excited, i finally figured out how to post threw my phone! Yay youll be hearing more from me!

Just got back from my check-up with my Rheumy and I am baffled by the test results.  Even my Rheumy was scratching her head.  During the first round of tests, my ANA, Anti-Smith tests were all highly positive.  The second round of tests, showed even higher levels of Anti-Sm and Anti-Chromatin.  The third round of tests, showed a negative ANA, but still highly positive Anti-Sm and Anti-Chromatin.  None of the results were ever considered boarderline.  The latest round of tests show that everything is now negative.  Negative ANA, Negative Anti-SM, Negative Anti-Chromatin.   But, I still feel horrible.  How is this possible?  My Rheumy wants to re-test again in 6 months, but at this point....is speechless. Thoughts?

 My PCP has refered me to a University Medical Center because she said that for where I live there is nothing more they can do. My neurologist hasn't offically diagnosed me with CNS lupus but is going to do the nerve test next week before seeing me to go over the last MRI and nerve test results.

This is very frustrating and painful. I just want it to stop.

I am having my first real flare, been going on for at least a month.  I think I was pushing myself to continue to work and keep up with social functions (had to, sister just got married and new babies in extended families) for the first 2 weeks or even a month of it.  Then 2 weeks ago I had to stop because the migraine/headache knocked me down, prednisone didn't work so my rheumy had me come in to run some tests.

There is a definite problem with my chronic UTIs and now kidney infection.  My rheumy put me on a stronger antibiotic than my PCP had prescribed and I have a pelvic/abdominal CT scan scheduled for next week.  She suspects pyeloneuphritis.  She called me yesterday with some preliminary blood work results... my liver enzymes were elevated.  I have never had this before.  She diagnosed me with lupus and has been my rheumy since 7/2008.  (I am still learning about lupus).  This is an unusual result for me, she is going to run more tests with the blood and she was pleased that the CT scan of the abdomen/pelvis will also show the liver.  I am scared.  When I saw her for my quarterly appointment early this past July all my numbers were excellent, the best they had ever been.  I have been living with fairly chronic psychological stress for about a year, but it has intensified over the last four months or so, both personal and my work environment is chronic high stress.  I could almost feel I was falling apart as it was happening, that I just was reaching a breaking point. and that although i should probably change something to reduce the stress, i had no energy left to do anything.  then i had a flare that knocked me down.  now these alarming test results.  I have been fortunate that my lupus has not effected any of my organs until (possibly) this point.  Just wondering if anyone went through something similar. i mean, can a flare cause the lupus to change how it affects the body?  and over the last few months I have become noticably weaker, and smaller.  weight loss without trying and my muscles are more sore and stiff than they used to be.  the glands along my lower back, groin area and neck are sore. 

And how do you all take care of yourselves when you know you are not well, but you don't look sick, so most people think you must be ok, and many of these people are your employers or family members.  I feel like I am now paying the price for not listening to my body sooner and somehow wanting/needing to be the type that just is keeps pushing through the pain because i need to work or i can't miss any of my sister's "Weekend Wedding" because I need to be there for her.  I don't think i ever learned how to take care of myself and I think I am paying the price for it today.  Are there certain symptoms to be aware of that signal a need to rest or slow down? 

I'm worried I won't be able to keep up with my high stress job, and may have to find alternative employment that will really effect me financially. 

Any feedback would be appreciated.  thank you. 

-Kristie

So I have to ask, what the heck is going on in there!?

I realize there are possible answers for everything and I know at any given time we can have just about anything show in the urine...so I guess what I wonder is, should I be expecting the PCP to order a 24hr urine collection? Or what other tests should maybe be done now? I am waiting for them to call and I have a follow up next week. Hmmmmmm.

I know kenalog injections can cause white blood cells in the urine (didn't have any of those!) but can it also cause protein??

Thanks for any info

Stacy

That being said, I believe my PCP has confused herself. Just yesterday she said if I have lupus it would still be positive but its negative so maybe it's not lupus.

I contribute all this confusion to unexperienced Doctors who need to just admit that they don't have the answers and can't help me. Honesty is the best policy.

I have elevated ESR levels.  I tested positve for sjogren's antibodies and positive on the anachoice screen.  I have all the lupus symptoms.  I get fevers and my face, ears, and neck become bright red--I don't have the classic butterfly rash.  I have muscle pain and weakness, migraines, cognitive dysfunction, blurry vision, incapacitating fatigue, hair loss, vertigo, etc.  I seem to have a lot of the lupus symptoms.

I'm sorry to be a debbie-downer...just trying to get as much information as I can to help myself.  I am also very sick right now...so I think that's where all this negativity is coming from.

p.s.  for those struggling with hair loss.  there is a great site for women called womenshairlossproject.com . 

For the passed two days, I have been super dizzy when I get up and I just thought it was because it was humid that it was really hard for me to get up. But the rest of the day I was fine, absolutely perfect actually.

Today I woke up with really bad lower uterus pain and back pain, I figured maybe my cyst ruptured so I figured I better go into the hospital. I was not contracting or anything like I have before when I miscarried but i knew something was wrong.

I went into the hospital and they told me I had KC or KS something in my urine and sugar. My blood sugar was 434, and they gave me insulin. within and hour it only went down to 340 so they gave me more insulin.

Another hour later it went down to 167. By that time i was shaking and ready to get outta the hospital. I was freezing before then but was feeling a little better and the pain wasn't that bad anymore. I then called my doctor and she told me that she thinks the prednisone is causing my onset diabetes and the weight loss. I told her i just thought it was because I had the flu last week and I should be fine. but they want me to take medrol? or metrodol, something like that to help my blood sugar stabalize.

I was just wondering what I should do. I really don't think I could possibly have diabetes, and I refuse to take insulin. I barely ate, and by the time they got my blood sugar so low and I was out of the hospital I was shaking and needed to down a candybar to get normal again.

Anti-Nuclear Antibody Titer

80(your value)

<80- (standard range)

H

(flag)

So, I had these blood tests run, and these are the results that I got back. If anyone could help me make sense of them that would be great. I have been back and forth from Pittsburgh with more and more issues lately, and they are still not sure what is going on. However, now that these labs are back maybe we will have some more answers. Though my neuro is still bouncing around MS ... and the rheum is looking at the lupus and sjogrens. (Lip Biopsy came back positive)

Well if you could please get back to me that would be great. I look forward to hearing from you and any sense you can give me with these results would be great. Thanks

Heather

Would  like your help thanks

I'm new to this site, and I would like to ask anyone if they have gone thur any test on the heart.  I had a problem with pain in my hip, back and side.  I went to the doctor, because the pain in my side got to a point where I had to find out what was going on.  Tests were done to check bladder, kidneys, and anything on the right side.  He found nothing wrong.  I was sent to my rheumy, she gave me muscle relaxers, that help some with the pain I had.  But, I got this pain that has started up in the chest, upper back, and side.  I have had this pain for several months. The pain is there no matter what I do. I was sent to a heart doctor.  Now, I'm waiting until the 18th for an Echo, and on the 24th an stress test.  The doctor went over what he was looking for, he talked about pericarditis, angina and blockage.  Now I'm waiting in pain for these test. If anyone can explain these test to me, I would be gratful.

 I have been having joint pain in my hands, feet, and knees,  fatigue, migraines, nausea, hair loss, mouth sores, and tingling in my arms and feet.  I also have hypothyroidism, but my endo has read my labwork and says that this is not related to my thyroid.  Any help would be greatly appreciated!

Here are the lab results:

ANA: positive 1:1280 homogenous pattern 

SM  SM/RNP  SSA SSB SCL-70 JO-1  Lyme Disease Anti-DNA  are all negative

RBC Folate:  414.9       ESR 12

Rheumatoid Factor <8.6   HCT 38.8 

Uric Acid 4.8      B12  290

EBV-VCA IGG  320    EBV-VCA  <10

CBC:    the only thing not in the normal range was eGFR >60 

Basically from ages 20-29 I had absolutely no symptoms of the disease. In March of 2009, I had a flare and after a kidney biopsey found that the Lupus was back in my kidneys and had progressed to Stage IV involvment. We were hopeful that Cytoxan and high dose Prednisone would do the trick again, but after four infusions my kidneys showed no sign of life and we had to move on. I have now been on Peritoneal Dialysis since March 2, 2009. 

The one odd part about my Lupus is I have never had any other flares or symptoms other than the kidney involvment these two times, and I'd like to keep it that way. Kidney failure has been enough for me.

The reason I am posting is because on August 24th (two weeks away), my father will be donating a kidney to me. I was wondering if there is anyone on this board who has received a kidney transplant (living or deceased) as a result of Lupus Nephritis? How they felt after the transplant? What there life is like post-transplant" That type of stuff. I've been told I'll feel like myself again. Any information woud be greatly appreciated.

- Justin

      I get copies of all the blood work done printed out but as I have tried to compare and study them I just find I am Redneck and they are Greek

So I thought maybe someone could tell me of a book to read, website to check out or anything to learn for myself a real rough general idea about these test names and numbers.

     I have never been to good at just blindly taking anyones ideas or opinions on things without learning about it.   I think we should be informed and know what is going on.   I also think maybe drs as wonderful as they are tend to get you leveled off and fear doing any drug reducing which I think is wrong, i think this could lead to drugs setting in and actually beginning to cause their own problems.

     I hope the fog is not causing me to confuse everyone.  Just dont know where to start?

Thanks much for any help or direction.

Grumpy

    Arisia;   I see your neighbor; were in s. colo.  near salida

I had my kidney biopsy last Wednesday week.  It went well.  I was a little stressed since I only have one kidney.   The procedure did not take long at all.  We have one small scare…..my pressure dropped to 64 over 34.  There was no bleeding and the orange juice helped bring my pressure back up.

I returned to work this past Monday.   For some strange reason I am not feeling well today.  Not sure if it is just a bad lupus day or I have pushed myself to hard and need to go home and relax for the next few days.  To be on the safe side I am going to leave early and take Friday off.

The results should be back in 2 weeks.  The decision will be made at that time as to whether continuing with cellcept with reduce the protein in the urine or if they will need to change medications.

  I had a nuclear echo done Tuesday and the results are in.  I have an elevated TID.  My rheumy talked to a cardiologist about me and "my case".  The cardiologist said I need to get in to see her asap and get one of these procedures done right away.

  Has anyone ever had one?  What is it like?  I am very nervous.

Hugz to you all,

PAWZ

Seems like it goes mostly with CREST disorder but the only symptom I have of that is Raynauds....and the Rheum did not mention CREST to me but just said I had lupus. I hope I haven't asked this on here already, there's a good chance I have and forgot already! Sorry if that's the case, though I am sure most of you will understand. 

My ANA pattern is not the one that goes with Centromere either...mine is mixed homogenous and speckled....? pretty sure, this one lab's reports are really hard to decipher. 

Thanks for any insight on the Centromere stuff...I did not think to ask at the first rheum appt. I also have high polyclonal gamma globulins, which I THINK I understand can just be indicative of inflammatory disease and nonspecific? 

THANKS!

Stacy 

I am new to the Boards.  I was recently diagnosed with lupus a few months ago and am confused by most recent lab results. Up until this week my ANA was always positive, however, this past week my labcorp test results indicate that I am negative for ANA antibodies, however my Smith Antibodies and Antichromatin Antibodies remain high despite the negative ANA.  My Smith Antibody levels are 5.4.  The range limits are 0.0-0.9 and my Antichromatin Antibody levels are 1.6.  The range limits are 0.0-0.9.  Does the negative ANA have any significance?  Thanks.

Rita

Cathy

The SCR-A & SCR-B came back ok, both levels @ 3 with the max level @10

ssDNA was 15 max lvl 99

dsDNA was 58 max lvl 40 - this one she didn't seem worried about

Sm was 0 max lvl 89

RNP/Sm was 7 max lvl 83

SSA (Ro) was 21 max lvl 91

SSB (La) was 1 max lvl 73

Histone was 14 max lvl 96

Scl-70 was 1 max lvl 32

25-Hydroxy Vitamin D was 20.04 min lvl 32, max lvl 100

Every one of those test are normal but the dsDNA test and the Vit. D test.  I'm not sure what the dsDNA test entails.   I think it's a more in depth lupus marker testing??...

I also had some other tests come up either high or low, I think these are liver tests from what I can find online.

Albumin 3.64 range 3.79-4.49

alpha-1 globulin 0.55 range 0.20-0.33

alpha-2 globulin 1.07 range 0.48-0.80

albumin % 51.90 range 55.80-66.10

alpha-1 globulin% 7.8 range 2.90-4.90

alpha-2 globulin% 15.2 range 7.10-11.80

I know these are for inflamation...

complement c3 198.0 range 59.0-152.0

complement c4 38.2 range 12.0-38.0

Any idea on simplfying these for me?? 

At the end of the visit she says here's some pain meds for you to try and see if that helps (nothing otc helps me).  She gave me ultram, which after reading the side effects I'm not sure I even want to take it, I might just deal with the pain! 

She also said the low vit. d levels will make my joints hurt as well as my weight.  I'm tired of hearing dr's blame my pain on my weight, granted I'm not little but my weight has nothing to do with my hands hurting, I don't walk on those.

Anyhoo, any help would be appreciated...TIA

It's in the ANA patterns result sections and says:

Note:                    SPRCS

Thanks for any information you can provide?

I had my first test come back positive for Lupus a few weeks ago, but the Dr. at the cancer center I've been seeing told me that she would have to run more test to confirm it because the first test isn't for sure. My question is what else could it be other then lupus, which would cause that test to show up positive? I'm just trying to figure out what else could be wrong other then Lupus, every test they'd done on me (blood, CT scans, X-rays, MRI's, ultrasounds, Etc) have come back fine. The only thing that they have found is that my white cell count has been a little high (between 11,000 to 18,000 the highest) for about 9 months now and the blood test the Dr. ran a few weeks ago which came back abnormal (I guess). I do feel a lot of the symptoms of lupus (from reading of the internet and here) such as the rash on my face (but its only on my left cheek) off and on fatigue, cramps and muscular pain in neck, weakness in all over especially in my legs, disoriented, dizziness, light headiness, and pains in different areas of my body at times, and worst of all I feel tingling and sharp pains all over my body especially my head. I was anemic after my daughter was born 6 years ago, and when my symptoms 9 months ago started was dehydrated. The ER gave my some IV fluids and I felt fine for a while and then it started again. I’ve been to the hospital so many times in these last 9 months, but they tell me its my anxiety and panic attacks then send me home.  I can't say I was taking care of myself at the time I started with the symptoms. But now I have been walking and eating better.  I have a lot of extreme stress due to work, kids, family, and college and I'm a smoker so I don't know if this could be causing this test to show up positive. I'm just trying to easy my mind I guess. I took a whole bunch of blood test a few days ago, and well I have to what and see the results. 

LUPUS ANTICOAGULANT NEUTRALIZATION.HEXAGONAL PHASE PHOSPHOLIPID 02/22/2010 Positive

And with it showing positive what does this mean?

Thanks all for your support through everything.