My apologies up front, this will probably be long! I originally joined this forum not planning to post, just maybe read and see what others are going through to assure myself I'm not crazy! lol But now I find myself in a position that I need to talk things out, and no one around me truly understands (not that they don't try). I was originally diagnosed with SLE 10 years ago due to extreme joint pain/stiffness and fatigue. I was active duty at the time, but they medically retired me. My husband is still active duty, so in the last 10 years I've seen 7 different rheumatologists. They all change the diagnosis just a little (with RA, without RA, RA overlapping, etc.), but it's always included the SLE. Tried a majority of the drugs out there. Currently I'm being fairly maintained by Enbrel, Naproxen, and Hydroxychloroquine. My rheumatologist started getting concerned with my labs and finding protein in my urine a few months ago, and put me back on Prednisone (I had pretty much just finally gotten off of it!). Since then he's grown more concerned, and bumped up the prednisone. Had my first nephrologist appointment today, and now they're scheduling a biopsy! I feel like things are just going so fast. I have so many questions, but unfortunately didn't think of any of them while at the doc's. Did I mention I had my 2 kids (ages 3 and 6) with me? lol Anyway, just curious if anyone else can give me an idea what to expect, both from the biopsy itself and where we go from there. I've had surgery before and never worried about it, but the complications behind this kinda creep me out a bit. Early on in my diagnosis I had false alarms with pretty much all the different organs (brain, lungs, kidneys, heart, liver), but nothing ever went beyond a few extra lab tests on my blood. I'm just kind of numb right now, but the "freak out" is starting to creep up on me. Help, please!
DKR82,
I had a biopsy in Nov. because of extremely high proteinuria...13.94. Norm is 0.01-0.95. Needless to say the docs were a bit concerned. I was amazed at how painless it was...only some minor achiness the following day.
Because it sounds like this is a new symptom, it's very hopeful that there is minimum damage as well as the ability to "control" it to a certain extent. Unfortunately, I am ANA neg so lupus was not diagnosed until the biopsy which means years of no treatment. It was only after TIA and stroke that it was discovered.
You may have an achy back, poorly controlled BP, difficulty urinating( I never had pain just a feeling like I needed to go but couldn't when I tried...weird).
The "false alarms" you had may not have been "false alarms" but the disease being active in a certain organ. I have had pneumonia, premature birth, TIA, strokes, heart arrythmia...to many other things to name, but this disease attacks healthy cells which means there may have been nothing wrong with the organ but your immune system was "confused" and went into heal mode.
Of all of the tests that I have had done, the biopsy was by far the easiest with the least amount of recovery. Make certain that you take any and all medications that you normally take in the morning, especially BP meds or they will not perform the procedure.
PM me if you would like...I would like to know how you fare. I have a feeling you will come through with flying colors. :)
XOXO,
DeAnne
P.S. I know that you are afraid, but as my grandmother used to say "Don't borrow trouble". After you get your results (which doesn't take long) your doctor will talk to you about what happens next. I would be interested to know.
I have no experience like this but the very best of luck to you!
blessings and prayers going out to you...<3 please keep us updated. ~Mare
i haven't had a biopsy but i know How hard this disease is with kids My boys are 2&3 and are currently barking instead of napping....good luck honey
DKR82,
I have had two Kidney biopsies and two separate experiences. I have SLE Lupus with skin/face involvement and uncontrolled loss of protein. I was told normal range is under 200. I have been as high as 7,000 and as low as 1,200. Currently at 5,300. First one was 7 yrs ago, and and the second one was last month. I would suggest to not go to any facility or hospital that is a teaching/university. The second one I barely felt it and was sore for a couple of days. Pay attention to your urine after (a little blood in it is normal but should be minimizing and clearing up as time goes on) i didnt experience any bleeding…and look at the entry site of lower back occasionally to check for signs of possible infection. Do NOT lift anything heavier then a pound or two for 2 weeks after the biopsy. A good Nephrologist will take the time to go over the biopsy report and answer any and all of your questions. I am on Cellcept with a blood pressure medicine ( those two combined are supposed to help the kidneys ) ask about any fibrosis, stenosis and the most important is your kidney function that’s measured by Creatine range. I also have Hashimotos (thyroid)
I have recently became a vegetarian and started using a Nutriblast. I’m becoming so radical in my nutrition in hopes to reverse disease…while still taking all my meds. Hopefully I will hear better news in April then I heard in Feb.
Blessings,
Donna
Get off the Naproxen now!!! It is an NSAID and it will destroy your kidneys!!! I have kidney disease and I can truly tell you this from experience. My nephrologist (kidney specialist) has me just taking Tylenol Arthritis for pain, NO NSAIDS!!! I can ONLY take my Mobic (another NSAID) if, and only when, I am in excruciating pain. (Which really is when I am in a bad flair. Please ask your nephrologist about this NOW!!!!
http://www.livestrong.com/article/196735-dangers-of-nsaids-on-kidneys/
Yeah, she (my nephrologist) asked about the Naproxen (which I'm taking per my rheumatologist), but never said anything about stopping it. I read about NSAIDs and the kidneys though, and wonder if it will be what they tell me to do when they call with my biopsy schedule.
zigsmom said:
Get off the Naproxen now!!! It is an NSAID and it will destroy your kidneys!!! I have kidney disease and I can truly tell you this from experience. My nephrologist (kidney specialist) has me just taking Tylenol Arthritis for pain, NO NSAIDS!!! I can ONLY take my Mobic (another NSAID) if, and only when, I am in excruciating pain. (Which really is when I am in a bad flair. Please ask your nephrologist about this NOW!!!!
http://www.livestrong.com/article/196735-dangers-of-nsaids-on-kidneys/
Thank you everyone for your support and info! The more info I have, the better I feel about things. I've been reading everything I can find online, but personal experiences are so much more helpful.
Great post, thanks for sharing. It helps so many people as the number of comments and views hows.
I'm the co-founder of this site and we started a Kidney centric support site recently: http://www.nephroticsyndromesupport.org/
Feel free to join :)
Got the call this afternoon, my biopsy is scheduled for first thing Monday morning. I’m kind of surprised by how quickly things are happening. The nephrologist said yesterday’s lab results showed fairly normal kidney function, but high protein (2grams). We’ll see what they find Monday.
Thanks Scott,
I definitely need to visit that site. I specifically want to look on the NSAID issue as I have been told NONE as well.
XOXO,
DeAnne
Scott Orn said:
Great post, thanks for sharing. It helps so many people as the number of comments and views hows.
I'm the co-founder of this site and we started a Kidney centric support site recently: http://www.nephroticsyndromesupport.org/
Feel free to join :)
DKR82,
That's wonderful news. It is not a long procedure and hopefully you have a pathologist at the biopsy center because that will mean that you get your results back good. I am just down to 2.5 grams but from nearly 14 grams it's a huge improvement. Many nephrologist will want to monitor it, especially as it's been rising, but there it's sounds like you have doctors that are on top of it and aware of the damage that can be caused. Awesome that your fnction is normsl.
I think you should look at all of the posiives in your sitiuation, not the least of which is a team that really seems to want to make certain you are at your best.
XOXO,
DeAnne
DKR82 said:
Got the call this afternoon, my biopsy is scheduled for first thing Monday morning. I'm kind of surprised by how quickly things are happening. The nephrologist said yesterday's lab results showed fairly normal kidney function, but high protein (2grams). We'll see what they find Monday.
I had mine at the end of January and its so much easier than spinal taps which I do for pseudo tumor cerebri. They lay you on your stomach and numb the area. You feel a small amount of pressure and its all guided by the MRI machine. You can have light sedation if you are worried but I was fine without. You do hear the clicking of getting the piece of kidney. Also you stay for 2-3 hrs after to make sure no bleeding. Good luck in all your endeavors
Hi,
I too had kidney biopsy in 2007. I was also scared but i must tell you it was painless. I was too weak that time thats why i got some difficulty. but doc discharged me next day and little precaution I had to follow like climbing on stairs, not to put weight and all for fifteen days.
I know its a difficult time for you. I will pray for you. dont afraid just believe in God and everything will be fine. All the best!