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jseda
05-23-2011, 02:02 PM
I was diagnosed almost 5 years ago to the day with SLE lupus nephritis. I have been having issues with spilling protein in my urine which my nephrologist was kind of shrugging off until now (probably because I went to a rheumy who was very concerned). My Cellcept, prednisone, and lisinopril have all been increased for the past 5-6 weeks.....well my protein is still low in my blood and high high high in my 24 hr urine results.

Has anyone else experienced problems with protein spillage and if so how did it work out for you? I am worried because i trusted this doctor and have been spilling protein for awhile and now I'm worried my kidneys are being damaged ( my BUN,CREA have remained normal throughout protein spill however). I am also in the process of finding a new nephrologist. Any help or suggestions would be greatly appreciated.

Thanks!!

Peridot20_Gem
05-23-2011, 03:32 PM
Hi jseda,

I've not had protein spillage but i do suffer with losing protein down below which forms into a thick moist like cream and i do wipe me regular besides showering but i'm under a gyno at the mo and showed her and she told me to stop wipping it away, as i was wipping good protein away and by doing it would make it come more.

Someone will answer you in due course who may be having the same problem or suffered it.

Terri xxx

Peridot20_Gem
05-23-2011, 03:38 PM
I have found this info for you incase it helps in anyway.

Lupus Nephritis and urine spillage


Lupus Nephritis (LN) is the disease of the kidneys due to lupus. This occurs when lupus autoantibodies deposit in the kidneys and cause inflammation. About 30-50% of lupus patients will develop LN within the first six months to three years of being diagnosed with SLE. Inflammation of the kidney prevents it from functioning normally and can cause it to spill protein, which causes frothy and/or bloody urine. Other early manifestations of lupus nephritis include swelling of the feet and an increase in blood pressure. These symptoms are usually seen as the first signs of the disease.


Signs of LN may include:

Swelling or puffiness of feet, legs, eyes
High blood pressure
Frothy urine or getting up constantly to urinate at night
Blood in urine
One may not experience any symptoms, however, so a urine test is needed. It’s crucial to have your doctor rule out other causes such as kidney stones or a urinary infection before considering the diagnosis of LN.

jseda
05-24-2011, 05:46 PM
Thank you so much. Yes i have done some reading up on proteinuria and lupus nephritis and it gave me similr information. Thanks for your help!

tgal
05-24-2011, 07:09 PM
I was diagnosed almost 5 years ago to the day with SLE lupus nephritis. I have been having issues with spilling protein in my urine which my nephrologist was kind of shrugging off until now (probably because I went to a rheumy who was very concerned). My Cellcept, prednisone, and lisinopril have all been increased for the past 5-6 weeks.....well my protein is still low in my blood and high high high in my 24 hr urine results.

Has anyone else experienced problems with protein spillage and if so how did it work out for you? I am worried because i trusted this doctor and have been spilling protein for awhile and now I'm worried my kidneys are being damaged ( my BUN,CREA have remained normal throughout protein spill however). I am also in the process of finding a new nephrologist. Any help or suggestions would be greatly appreciated.

Thanks!!

Hi There! Welcome to the group! I believe Linda had some issues with protein spilling. She is an Aussie so her day should be starting soon. I also know there are several others that have had that issue and hopefully they will pop in quickly as well.

Please make yourself at home and please keep us posted on how you are doing!

jseda
05-25-2011, 09:44 AM
Thank you very much!!

Peridot20_Gem
05-25-2011, 11:02 AM
Hello jseda,

I hope Linda as been able to help you out with your concern and i do hope your ok.

Linda From Australia
05-26-2011, 04:32 AM
Well here I am with all the answers .....

Last year I had kidney issues, however, I did not spill any protein ... sorry to disappoint you all.
When I was a kid though, I did spill protein, and was booked into having a biopsy, but then when they tested me again there was no protein, but another time there was protein. So the doctors decided to just let me be as this was apparently normal for me.

Since being diagnosed July last year, all my tests concerning protein have been OK, so maybe it was just around when I was a kid.

Hopefully your protein issues will resolve very soon

Peridot20_Gem
05-26-2011, 08:14 AM
Linda you've not disappointed me mate, i'm pleased you don't suffer with it because one lesser problem all the better. xxx

riverlaken
05-28-2011, 01:32 PM
Hey there jseda,

I too, spill the protein in my urine +4 and have a high blood count. My BUN/CREA is low at 10.0 and my CHLORIDE is low 93. I am not sure if that helps any? I just had my first appointment with a Neuro doc and he ordered me a C Spine MRI which, was two days ago. This Neuro doctor also told me that I have abnormal reflexes in both arms and overactive in my both legs, I am not sure what that means yet? I am waiting for my knew appointment with a PCP, so I can start anew with him on 7-5-11.

Well, I don't know of any suggestions, although my possitive vibes are going ===========> your way.

~Dana

Peridot20_Gem
05-28-2011, 03:31 PM
Dana,

Thanks for replying to jseda and helping out the best you can with how you suffer and also your levels. xxx

lovedbyHim
05-29-2011, 09:02 AM
I have had lupus for 6 yrs. The protein shows up off and on. Lately bilirubin is present. I watch it closely and read everything. My trust in docs is weak and so I now take the bull by the horn. I question everything.

Peridot20_Gem
05-29-2011, 10:04 AM
Well experiencing doctors and specialist for 25yrs some can be good and other's a right load of rubbish and in my case my rhuemo is'nt that brill, so what i can't get off him to know my dermo gives it me instead and like yourself, i'm always studying things about it myself.

Roni24
06-17-2011, 08:22 PM
I was diagnosed with SLE back in 1999. I have had issues with pericarditis, arthritis, pneumonia, raynauds, positive ANA, and many other things over the years. I have had protein in my urine (that I can remember) in almost every UA over the past couple years. I don't think it has been very high though. My primary care doesn't think much about it and says it is very common for women to show positive for protein in their urine which is usually just indicative of a contaminated sample. I also was told the first urine of the day will have a larger quantity of protein. I also wonder if there is specific medication that may be causing it. As someone who suffers with the daily chronic pain associated with Lupus, I know how many different meds I take a day (from Prednisone to Plaquenil). I believe something as simple as Tylenol can cause protein in urine but I have no medical training only my personal experience. The good thing is the liver is an organ with a remarkable ability to bounce back. Best wishes.

steve.b
06-17-2011, 09:31 PM
welcome roni.

lovedbyHim
06-17-2011, 10:21 PM
Hi jseda, I was very concerned when I had protein show up on several occasions. I also have has red cells and white cells show up. I've had my docs be concerned when they saw it as well and they do rechecks each time it shows up. I watch it carefully but try not to panic. Again, read all that you can from reputable medical sources to become knowledgeable. I have read enough to believe that if it comes and goes, it is better than if it stays. Mine seems to be staying lately. Hope this helps you. I had cultures done while screening for protein and my urine was clean of contaminants yet positive for protein. My legs swell more and blood pressure goes up at those times as well. Please let me know how things turn out for you.

Peridot20_Gem
06-18-2011, 03:29 AM
I was diagnosed with SLE back in 1999. I have had issues with pericarditis, arthritis, pneumonia, raynauds, positive ANA, and many other things over the years. I have had protein in my urine (that I can remember) in almost every UA over the past couple years. I don't think it has been very high though. My primary care doesn't think much about it and says it is very common for women to show positive for protein in their urine which is usually just indicative of a contaminated sample. I also was told the first urine of the day will have a larger quantity of protein. I also wonder if there is specific medication that may be causing it. As someone who suffers with the daily chronic pain associated with Lupus, I know how many different meds I take a day (from Prednisone to Plaquenil). I believe something as simple as Tylenol can cause protein in urine but I have no medical training only my personal experience. The good thing is the liver is an organ with a remarkable ability to bounce back. Best wishes.Hi Roni,

I lose protein and not from my urine but it's forms a white foam down below and my gyno looked at me and told me it's from the Lupus, as i keep wiping it away and she told me to stop it, as it's good protein and the more you do it, you'll cause your system to release more.

So i'd say the same thing for the urine and it may be the Lupus causing it and no the meds.

missfearless
06-21-2011, 02:33 PM
I'm experiencing this right now! How long can this last? Everyday is a struggle to walk due to fluid retention.

lovedbyHim
06-21-2011, 03:34 PM
Hi missfearless, my episodes of extra fluid retention while spilling protein in the urine vary in length. Sometimes it only lasts a few days other times a week or more. Right now my feet & ankles have fluid but not nearly as bad as when my kidneys are acting up. There is no pain involved for me. I hope this helps. You can pm me if you like. Hugs

Peridot20_Gem
06-21-2011, 03:34 PM
Hi Fearless,

I just saw what you put in chatbox, i did comment and got no answer if you taking prednisone this can be the cause of your problem mate.

Hugs Terry xxx

missfearless
06-21-2011, 04:56 PM
Hi peridot and loved by him. I'm seeing the doctor today so hopefully they'll be able to find the cause. And i'm taking prednisone. :( 40mg per day

tgal
06-21-2011, 05:33 PM
I just wanted to stop in and make sure you make it to the doctor. I am on 60 mg of prednisone every day and what is happening to you should not happen. Yes, you do swell however if it is to the point that it is in your upper body and hurting it MUST be looked at because there could be a blockage of some kind. Please keep us posted

missfearless
06-21-2011, 05:49 PM
yesterday i was given antibiotics and I think I took too much at one go because I'm developing rashes now on my face. what happens if I take too much antibiotics?
I just wanted to stop in and make sure you make it to the doctor. I am on 60 mg of prednisone every day and what is happening to you should not happen. Yes, you do swell however if it is to the point that it is in your upper body and hurting it MUST be looked at because there could be a blockage of some kind. Please keep us posted

tgal
06-21-2011, 06:11 PM
It could be an allergic reaction to the antibiotic. Those can go from mild to severe, even deadly. You need to get to the ER as soon as possible

missfearless
06-21-2011, 06:19 PM
yikes! I'm going to the hospital in 3.5 hrs time.


It could be an allergic reaction to the antibiotic. Those can go from mild to severe, even deadly. You need to get to the ER as soon as possible

lovedbyHim
06-21-2011, 09:38 PM
Mari, did you ever here "For such a time as this?" I think you are right on and it's good you were able to get this info to her rift at this moment in time. Antibiotic reactions can be deadly and it sure sounds fishy to me. So glad you're with us. Sick as you are and you took the time to do this. Thanks beautiful lady!

Fearless I sir hope you are okay!

Peridot20_Gem
06-22-2011, 08:20 AM
Hello Fearless,

I hope you got the antibiotic business sorted as it sounds like an allergy and how did it go seeing the Doctor as anything showed up??

Terry xxx

missfearless
06-22-2011, 11:43 PM
Hi ladies

I saw two doctors but both of them don't think that I had an allergic reaction. It's alright now, I'm off that antibiotics and they put me on another one. I'm taking cellcept now and hopefully it'll improve my condition. :) thanks for all your support!

steve.b
06-23-2011, 12:02 AM
glad to hear the rash has worked out fine.
how is the retention issue

missfearless
06-23-2011, 12:16 AM
still having water retention but I'm cutting down my fluid intake.

lovedbyHim
06-23-2011, 03:20 AM
Hi missfearless, did the docs have any concern about the water retention? What do they think is causing it?

Peridot20_Gem
06-23-2011, 08:25 AM
Hi fearless,

Please keep we all updated please.

Terry xxx

missfearless
06-23-2011, 07:58 PM
The kidney biopsy showed that I have class 4/5 lupus nephritis.


Hi missfearless, did the docs have any concern about the water retention? What do they think is causing it?

tgal
06-23-2011, 08:26 PM
The kidney biopsy showed that I have class 4/5 lupus nephritis.

OK The good news here is that a 4 is usually still treated with steroids and immunosupressant drugs. Yes, there is a possibility of kidney failure (no need to lie to you because you can look it up yourself) however it doesn't have to be that way. One thing that is VERY important is that you make sure to never stop meds again. I am not jumping on you, or your mom, heck I did it once myself (and I am still paying for it).

There are times we may be able to "play around" with Lupus and try different things but once there is organ involvement that time is over. We already know that your mom has you eating healthy which is very good. Between that and taking your meds you have a good shot of getting the kidneys back on track. Try not to worry. Just do what you have to do in order to get your body working the best that it can.

Don't forget... we are here for you

missfearless
06-24-2011, 02:24 AM
Thank you Mari for the tips and advice. :)


OK The good news here is that a 4 is usually still treated with steroids and immunosupressant drugs. Yes, there is a possibility of kidney failure (no need to lie to you because you can look it up yourself) however it doesn't have to be that way. One thing that is VERY important is that you make sure to never stop meds again. I am not jumping on you, or your mom, heck I did it once myself (and I am still paying for it).

There are times we may be able to "play around" with Lupus and try different things but once there is organ involvement that time is over. We already know that your mom has you eating healthy which is very good. Between that and taking your meds you have a good shot of getting the kidneys back on track. Try not to worry. Just do what you have to do in order to get your body working the best that it can.

Don't forget... we are here for you

Peridot20_Gem
06-24-2011, 03:42 AM
Hello Missfearless,

Sorry to hear about your diagnosis but what Mari (tgal) as said is also true and to the point because organ involvement is serious but please keep taking your meds to help you along.

I'm adding this link as it shows the stages of 4/5 of Lupus nephritis.

www.kidneypathology.com/English_version/Lupus_nephritis.html

Hugs to you Terry xxx

missfearless
06-24-2011, 09:05 AM
Thanks Terry.

I did research online about my condition so I understand it better now. I also know two doctors personally (they were my ex neighbours) and by fate, one of them is a renal doctor so he explained my condition and everything to my mom so she understands the importance of the cellcept. The good news is all the doctors said I'm in the early stage so it can be cured. I'm still waiting to see my kidney doctor so we shall see how that goes.



Hello Missfearless,

Sorry to hear about your diagnosis but what Mari (tgal) as said is also true and to the point because organ involvement is serious but please keep taking your meds to help you along.

I'm adding this link as it shows the stages of 4/5 of Lupus nephritis.

www.kidneypathology.com/English_version/Lupus_nephritis.html

Hugs to you Terry xxx

Peridot20_Gem
06-24-2011, 10:06 AM
Hello Missfearless,

Nice to hear you've been updating your knowledge on the condition as we all need to do it regular as you never know from one day to the next what's facing you around the corner and it's so nice that a neighbour being a renal Doctor as explained everything to you, you can't get no better than that.

I must say i am pleased so much for you that it's in the early stages and there's a cure but that's lovely to hear, i just hope they start you on meds or whatever they're going to use straight away and lets hope your appointment comes through quick.

Thank you so much for updating we and letting we know.

Hugs to you Terry xxx

steve.b
06-24-2011, 08:16 PM
i am glad you, (and mom) are learning more.
even better news that your neighbour thinks it is tottally cureable.

Peridot20_Gem
06-28-2011, 09:33 AM
Hello Missfearless,

How are you feeling in your health and i do hope it's been a less pain free day for you.

Terry xxx

wrightrs
06-28-2011, 04:28 PM
I've been spilling the protein on and off for along time now. I get very worried about it but my doctors just keep doing labs and never treat the problem.

Peridot20_Gem
06-28-2011, 04:35 PM
Wrightrs,

It's funny you mentioning it also because so many member's have this but very rarely anyone says how here GP or Specialist is going to treat it, it's usually just more tests.

Terry

wrightrs
06-28-2011, 04:44 PM
I do know some people with lupus go on dialysis if the protein gets to bad. That's what worries me.

Peridot20_Gem
06-28-2011, 04:50 PM
I stated early on in this thread that i lose protein also but not in my urine in comes away and forms into a white froth and when i saw the gyno i told her i wash me besides keep wiping it away and she told me to stop it, as by doing that i'm making myself lose more good protein.

If it does come to dialysis it can be a worry then but try not to look on the black side please, as it does'nt help you.