View Full Version : Question about lupus nephritis

08-21-2011, 02:36 PM
My name is Samantha and I have had many symptoms of lupus for 12 years off and on. Although the fatigue has stayed the whole time and that sun sensitivity with butterfly rash. Atleast it looks like butterfly rash. I have been told by rheumatologist,, and a pcp that works with the rheumy that my Ana was negative and I don't have lupus. I am pretty sure I do, I got a rash about 12 years ago after birth of my first child. No one knew what it was but the only thing that helped was prednisone. When I would finish the prednisone the rash would reappear so different drs kept me on this Med for about 2 years and then I became pregnant again and had t9 deal with the rash which was not as bad because I stayed out of sun because I had nausea and knew it made me more sick and caused the rash to worsen. I did get a Dr who said I had lupus but I thought that he meant I had a weak immune system because I had been told that by my Sobel Dr because of the prednisone. I had 4 more kids following all that so I never sought out treatment for rash and other symptoms that were getting worse I thought it was pregnancy related. I ha# all 6 children premature and had been on bed rest with all pregnancies .. ffw to now 3 yrs later I am almost bedridden yet the rheumatologist says I'm depressed and nothing is wrong! Because my Ana was negative! The rash wasn't there when I did the test so I knew it would be! Now I have protein and blood in my urine, severe edema, dark toxic smelling urine, weak legs and muscles, I can't stand or walk very long or my feet and legs ankles, face and hands swell up and turn red! I have fallen down 4 times in the past 3 weeks and almost broke my knee because my legs just give out for no reason! And my brain seems to not be working! After _y last fall a few days ago I didn't know what happened and I could hear my husband asking if I was ok and what happened but I couldn't answer it was like I was dreaming and couldn't wake up! Scary! My heart rate is up and down, shortness of breath, really sleepy and can't stay awake very long if I lay down! I have sores in my nose, my mouth is so dry I can't quench my thirst, everytime I eat or drink I get severe stomach cramps and leg cramps! My eyes are swollen, and can't think normal and my words are hard to get out and I say them backwards! Has anyone had all this with lupus nephritis without being diagnosed with lupus? My pcp said the past 3 urinalysis showed blood and protein in my urine but no infection! My kidneys feel heavy and I have a salty taste in my mouth! My lupus symptoms are all flaring and I am trying to attach pictures of my butterfly rash to get anyone who will give their opinions, please respond to this I need to know if I am in kidney failure. Thanks.

08-21-2011, 04:49 PM
Hello Samantha, welcome to our wonderful family. Boy after all those premature births and 6 kids, if you weren't depressed I would wonder how that's possible. That's a lot of stress!

As I read your words I have several thoughts go through my head. Yes I have had all the symptoms you mention. My ANA has shown positive and negative. Lupus diagnosis was given to me before my ANA results came back, because of my history and presenting symptoms.

I was depressed, joints were swollen, fatigue was off the scales, sores in mouth and nose, butterfly rash, etc. My thyroid was trashed by the Lupus. Once the doctor discovered hoshimotos thyroiditis and it was treated, I felt a whole lot better. However, hoshimotos can not be discovered with a simple T3-T4 test. An antibody test needs to be done. What I am trying to say is that there are so many tests that can be done to get to the bottom of why you are almost bedfast. One day I told a poor ignorant doctor,"Ok, let's go ahead and believe that all I have is depression. Give me drugs for it and make me better then!" He didn't, lol. After that run in, be tested my thyroid for antibodies and it was positive. His pride was so wounded, he typed me a note instead of calling me to say I had to be treated for thyroiditis. Lol

As far as the protein and blood in urine, it does not necessarily mean lupus nephritis, so please don't take that leap. Many other tests would need to be done to diagnose that. If it were me, I would try to find a good rheumy that someone else trusts, and asks to be seen again. I am also now on cymbalta for pain, but it truly helps my mood and sadness. I fought that med for 5 years and wish I had taken it sooner. Lupus can definitely cause depression.

I hope this helps some. There are many on this forum who know far more than me, so stick around. Read all you can and ask questions by posting on the forum. Hang in there dear. It took me a lot of quack docs before I found a great group of them. Don't lose hope. You gave birth to 6 kids, you can fight Luke mad to get proper treatment.

08-21-2011, 05:21 PM
Hi there! Welcome to WHL. We are so glad to have you join our family.

You have to understand that we are not doctors but I can tell you that protein in the urine happen for many reasons. It doesn't mean that you do or don't have Lupus. I will say that a positive ANA doesn't automatically mean that you do (or dont) have lupus either. A lupus diagnosis comes when you have 4 or more of the criteria and everything else has been discounted. I am about to post a link to a thread in the New Members section that explains how Lupus is diagnosed. Please understand that these things to not have to appear all at one time they are based on a cumulative basis. This means that, for example, you have a malar rash but it is gone by the time next time you go to the doctor you don't just ignore that it was there. You add that to other symptoms that you have had until you have the 4 needed,

Please make yourself at home. There are wonderful threads here with fabulous posts. You will also find many wonderful people that understand what you are going through. I look forward to getting to know you

Criteria For Diagnosing Lupus (http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis)

08-21-2011, 07:53 PM
hi samantha,
i do not have anyhting extra to add, tgal has provided it all.

but i did want to welcome you to our cyber family.

08-21-2011, 08:33 PM
Hi there! Welcome to the forum (:
Your symptoms definitely do sound a lot like Lupus, but in the further stages. For some reason, people will actually show up with a negative ANA when they do have lupus, just as some people will show a false positive on a syphilis test, when they have no such thing.
It's all very tough to get through, and each person has a different case and different kinds of things to deal with.
I myself haven't been diagnosed with Lupus - i'm actually still waiting to see a rheumatologist, so I'm no specialist when it comes to things like this, especially when I haven't been sick for very long.
One thing that did stand out to me, was just a thought that you may have diabetes? Just a few things you said may have been warning signs, so perhaps you could get a blood glucose test from your doctor, to rule it out?
It's just a thought, of course.
I can't really tell you if you're in kidney failure or if you have Lupus or not, sorry, but I just wanted to stop in and say hi and welcome you to the group. I sincerely hope that you start to feel better and figure something out soon.

08-22-2011, 08:05 PM
Hello and welcome Samantha. You'll find many people here with lupus and also with a negative ANA. ANA is only part of the criteria as tgal explained. I was told it wasn't lupus when my ana was negative at one time but it had been positive before that test. I was misdiagnosed with many different diseases until I finally found a good doctor that understands autoimmune disease really well and diagnosed me with Lupus, Sjogren's...and something else she's not sure of yet but suspects scleroderma. I asked her why so many specialists kept missing the diagnosis of lupus and how the lab work wasn't so helpful in the past. She explained it better than I can repeat it, but the jist of it is, it's easier to catch Lupus in lab work when it's active, wreaking havoc... then after the flare is over, things in the system calm back down, leaving a body without any sign of trouble other than a body trying to get over the damage done. I happened to visit a different primary physician one day and the lab work she did found a positive ana and other things like inflammation being really high and presence of SSA and SSB, amid some other interesting findings. My doctor explained that the primary doc happened to catch it in the act showing us something like lupus is going on and more investigating needs to be done. By the time I saw her, so many other tests had been done that not one specialist I saw before her connected the dots, but she did when she saw it all and shook her head, wondering why they couldn't put the puzzle pieces together. One rheumy diagnosed me with a rare deadly disease called HAE. She had me petrified I would someday find my throat swollen shut due to that misdiagnosis. The lab work that made her think I had HAE actually was one more piece to the Lupus puzzle... low C1q.

Lupus patients are like snowflakes as is often quoted here and it's so true. No one's test results are the same, no one's symptoms are exactly alike, and not all lupus patients respond to the same treatments as others do. Not many doctors understand that or care to hear it explained to them either. My purely unprofessional advice to you is...the rash you describe sounds like something systemic is going on and amid your other symptoms it sounds a lot like autoimmune disease. That a doctor in the past thought you had lupus says something. Did this doctor explain why he thought you have lupus? You need a doctor that is very familiar with and successful at treating autoimmune disease. I started out with only one general practitioner that thought I had lupus... and after many visits to different specialists after that, and thanks to a dear friend, I found a rheumy that agreed with the general practitioner and then went on to explain other findings we didn't know about. You may have a long search for that good doctor. Many of us here were on and still on that long journey to proper diagnosis, but all here will tell you that you are well worth the trouble and don't give up until you find that doctor. Rare as they seem, good doctors do exist. It's a matter of finding them. This is your body. You're in charge. If a doctor stinks, fire him/her and find another. Continue to stay out of the sun and take very good care of yourself.