Newly DX Lupus Nephritis

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

starfishy
New Member


Date Joined Nov 2015
Total Posts : 4
   Posted 11/7/2015 12:39 PM (GMT -6)   
Hello everyone,

My boyfriend has recently been diagnosed with Lupus Nephritis (LN) for about a month now. I am deeply concerned for him! He has major proteinuria and >8 grams of protein in his 24 hr urine. The rheumatologist started him on the pulse steroid therapy (Solu-Medrol 1 gram IV x 3 days), CellCept 1 gram twice daily, and Prednisone 60 mg daily. He just underwent a kidney biopsy, of which we are currently waiting for the results.

For about 3-4 days now, he's been noticing that his feet, ankles, and knees are getting swollen - could this be the side effect of the Prednisone?

He also still notes some foamy urine (of which had improved before his diagnosis) - so my question is, how long did it take for the foamy urine to become normal? Does it even become normal?

For those who have been diagnosed with LN, how long have you had it? What was your course of therapy (medication-wise)? Did you have any failed treatment? Were you ever hospitalized? Did anyone go into Chronic Kidney Failure where you required dialysis?

Any help would be deeply appreciated!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/7/2015 2:29 PM (GMT -6)   
One of our moderators here has it. I believe she is on dylesis.

I hope she can answers your questions better than me.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/7/2015 2:43 PM (GMT -6)   
Amy was on dialysis, but she had a kidney transplant about a 18 months ago and is doing great. She doesn't check in very often anymore, but I'll give her a heads up that we have a new LN member so she can help out.

Prednisone doesn't usually make knees, legs & feet swell. Is he drinking enough water? We tend to retain water and swell when we aren't drinking enough.

I'm surprised they didn't suggest some dietary changes for him -- unfortunately I don't know enough to suggest what they might be. I'll see if I can get Amy to check in.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/7/2015 5:07 PM (GMT -6)   
Hey starfishy! I have lupus nephritis and when I was first diagnosed, I was started on the exact same meds your boyfriend has been put on! With the pulse therapy of solu-medrol at a gram and immediately starting 60mg of prednisone, there will be edema. I would get pitting edema all the way up to my stomach. I was put on a diuretic for that. As far as the cellcept, I was put on 2grams twice daily and 80mg of prednisone daily.

The foamy urine for me came and went. I also had a lot of red blood cells in mine so my urine appeared to be like tea or Coke colored and foamy. Another good sign of still spilling large amounts of protein is having to get up more than 4 times a night to use the bathroom. With the steroids that high, the treatment should be pretty quick for the kidneys! Do you know what his creatinine and BUN are?

I was diagnosed with lupus nephritis January of 2008! Due to my kidneys failing (function was below 15%) I was hospitalized, immediately had a kidney biopsy, had a little bleeding so kept a few days longer, started on exact meds you stated and was released once my function had gone up a good bit! I got my biopsy back and it just confirmed the suspicion of LN and what type I had (can't remember now) and that I was at stage 3 kidney disease. I am not a typical person as far as medications, I did not respond to medications or I had allergies to them so after so many pulse therapies of Solu-Medrol and oral prednisone, we couldn't continue prednisone like that for other health reasons. I was in and out of hospital for the next 3 years very frequently. I was able to keep my Job since I had gotten the FMLA filled out. Then in 2011 my kidneys went back down the wrong path. I had run out of medication options so was put in a clinical trial. This didn't work and in October 2011 I started dialysis. I wasn't allowed to receive a kidney until my lupus levels were better controlled so had to wait a year and half for that to happen. Then on May 20, 2014, I had a friend donate a kidney to me and it was successful and my function is now at 100%!

Don't let the what ifs worry you or him. Make sure he follows doctors orders and never misses a lab apt. They should keep a very close eye on his kidneys until the docs are comfortable. Then he will have labs done every 2-3 months. Was he by any chance put on lisinoprol? It is a blood pressure medication that is know. To help reduce the amount of protein the kidneys are leaking!

Let me know if you have any other questions!! Cellcept is now considered the golden started for treating lupus nephritis!! He should do very well on it :)!
Amy
Lupus Moderater

starfishy
New Member


Date Joined Nov 2015
Total Posts : 4
   Posted 11/7/2015 11:20 PM (GMT -6)   
THANK YOU so much, Amy, for sharing your experience with me!

So glad to know that prednisone causes edema, and that you experienced almost the same symptoms as my boyfriend! I don't think he will be put on a diuretic because his blood pressure is on the low end already (~100's/60's). I asked him to elevate his legs while he sleeps to help off-balance it!

He doesn't get up to use the bathroom a lot during the night, but he still has foamy urine to date (I just asked him like right now). :\ His Creatinine was 1.13 and his BUN was 14 in mid-October at the time of his diagnosis. His GFR is 77, but I don't know what that means. He is due for another check up next week, so hopefully these numbers will improve since he has started on his medications.

The kidney doctor has not yet put him on Lisinopril - we asked about it and the doc said that he doesn't think he needs it just yet. So that must be a good thing right?

Do you still get foamy urine now that you have a new kidney? Can I also ask how was your social life after your diagnosis of LN? I read that Prednisone and CellCept suppresses your immune system - so how was that like? Did you get sick easier or did you consciously try to avoid crowds at malls or amusement parks? Are public swimming pools safe to go in? Or taking airplane trips? Did you try to avoid raw foods such as sushi or medium rare stakes? I work in the Pediactric ICU and I am super scared of bringing home germs for him.

Thank you and everyone so very much for your help and support!

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/8/2015 7:32 AM (GMT -6)   
The kidney numbers are ok, could be better and hopefully will be with the recheck. To put the numbers in perspective, I started dialysis when my creatinine got to 6.1 and my BUN was well over 100. With my new kidney, I no longer have any symptoms of kidney disease. If I ever notice them, I will have to go to ER as its a sign or the lupus attacking the new kidney...so hopefully never!

My social life after LN kind of went down. Not because of the diagnosis but because I had a lot of issues with meds. BUT, now I am on stronger meds to make my immune system very low so my body doesn't attack new kidney and it really hasn't changed much. Due to how low it is, I am in a preventative antibiotic all the time and any sign of infection....immediately going to doctor. I have had my kidney since 2014 and think I have gotten sick maybe 2 times and they were just common cold illnesses. I am allowed to go in swimming pools but was told to avoid hotel swimming pools (unless it was a resort one) and all hot tubs. I can eat whatever I want (no sushi but I don't like it) but I do enjoy my steak medium rare with no issues. I have been to Costa Rica and flown about 7 times. He needs to be more conscious of hand washing, not touching public door handles (maybe use a handkerchief or a friend open it) if he does open a door or touch something people have been all over, hand sanitizer works great!

When you get home, it might be a good idea to immediately change clothes and wash up real good. When I was on another drug, my sister in law was a teacher and would have to come home, put clothes in washer, and jump in shower BUT, my WBC was .8 and that shouldn't happen on the dose of cellcept he is on :)! It happened when I did a very strong drug at a very high dose of cytoxan.

I have to run to church, I will check back in later to see if you have any other questions :)!
Amy
Lupus Moderater

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 11/8/2015 4:40 PM (GMT -6)   
I have had lupus with kidney involvement for 10 years. Also have a rare muscle disease called polymyositis which is also autoimmune. Lupus hit me first and was very severe attacking all my joints, GI tract, kidneys and some cognitive impairment. Polymyositis hit me next and almost did me in and left me quadriplegic with a feeding tube 10 years ago. My diseases were resistant to treatment and after losing 40 lbs of muscle in a week it took IVIG to save my life and control my immune system. After that I took prednisone and Imuran. Once under control (this took almost a year) my kidneys and other organs recovered and I have no permanent kidney damage since my LN was caught early with a successful treatment. I take meds for my kidneys but except for a recurrence of lupus last and this year take no controlling meds.

Made a physical recovery and was able to return to downhill skiing, golf, tai chi, and other activities despite being in my mid 70s. There is life with lupus and most cases are controllable. If your boy friend has not seen a nephrologist he should and make him/her one of his team of docs. Having lupus, even a severe case, does not mean you cannot lead an active and fairly normal life. However, there is no cure and finding the right treatment is not always easy. I was in complete remission from both diseases and lupus woke up to attack my liver and blood. Ok now but I took steroids again this spring and early summer for about 3 months. Next step if it comes up will probably be IVIG. Also, every case of lupus is unique and each patient responds differently to treatment and progression of the disease. Most cases are treatable but some are resistant.

Life is good.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

starfishy
New Member


Date Joined Nov 2015
Total Posts : 4
   Posted 11/14/2015 11:52 AM (GMT -6)   
Thanks Amy and Bill for sharing your stories. It's really nice to know that there is still life with lupus.

My boyfriend's kidney biopsy results came back with "membranous lupus nephritis." The rheumatologist said that there is no damage, no scarring, just a lot of inflammation, and she had increased his CellCept to 1.5 grams twice daily to try to decrease the inflammation faster.

He is following a kidney doctor, but the biopsy results were back soon enough and so his first appointment with the kidney doctor was kind of pointless. :\ He asked if he should start on Lisinopril but the kidney doctor said not yet. Maybe with the next appointment, which is next week, with the rheumatologist, she will start low-dose Lisinopril.

Amy and Bill (plus anyone else out there), do you remember what the results of your biopsy if you had one?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 11/14/2015 12:04 PM (GMT -6)   
I don't remember the details and don't have a copy of the report after 10 years. There was some minor damage but my kidneys have returned to normal function and are not a problem although my docs have kept me on low dose of Lisinopril and a diuretic over the years. No big deal.

The biopsy results seem ok to me. Treat the underlying cause and possibly Lisinopril or a diuretic ongoing but your nephrologist is the one to rely on. Lupus is complicated but if you get it under control and monitor it there is no reason to believe your boyfriend can't lead a normal life. Even though I have ongoing problems with lupus (liver and blood), life is good and I don't let anything stand in my way.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/14/2015 12:33 PM (GMT -6)   
I had diffuse proliferative nephritis. With a lot of scarring and permanent damage along with heavy inflammation.

For me, at this point is when my nephrologist stepped in and managed my lupus and lupus nephritis treatments. I followed up with rheumy but kidney doc did all the medicine changes! I do know they worked closely together trying to advent kidneys. I live in a very large medical community and my primary doctor, rheumatologist, and Nephrologist were all on the same floor in the medical arts building part of the hospital. At times I would meet with kidney and lupus doctor at same time to figure out best plan!

This was very encouraging to me and I hope your doctors communicate closely with your boyfriends course of treatment!
Amy
Lupus Moderater

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/14/2015 12:37 PM (GMT -6)   
Oh...I ended up having 3 biopsies through out the journey to figure out how bad things had gotten. It helped determine the best treatment :)
Amy
Lupus Moderater

starfishy
New Member


Date Joined Nov 2015
Total Posts : 4
   Posted 11/24/2015 12:34 AM (GMT -6)   
Hi everyone,

Just wanted to give you all an update on my boyfriend's status -- He had his one month follow up with the rheumatologist and it turns out that he is responding very well to the drug therapy (Prednisone 60 mg daily, CellCept 1.5 gram twice daily, and Bactrim DS 1 tab every Mon, Wed, Fri)! His urine protein went from 12 grams to 5 grams, which is great news! His SCr also decreased from 1.13 to 1.0 and his C3 and C4 seems to be trending into the normal range. Since he was experiencing quite a bit of lower leg and feet swelling, the rheumatologist decided to change his Prednisone to Medrol because Medrol is supposed to have less feet swelling. Has anyone had experience with Medrol and his/her swelling improved?

Also, it seems that he has been having Raynauds Syndrome as well. The rheumatologist started him on Procardia XL 30 mg once daily, but we are a bit hesitant to start this medication because it will also lower the blood pressure. His blood pressure is usually in the 110's. I bought him some thermal gloves and Sherpa lined slippers to wear around the house, but it's hard to wear those thick gloves when he's working! He is starting to develop some mild skin ulcerations at his finger tips from the Raynauds too. :\ Does anyone else have Raynauds Syndrome and what have you done to help relieve it? I am looking some gloves on Amazon but maybe someone here has already tried a brand and can recommend one? The rheumatologist said that if we don't do anything about it, then he may be at risk for gangrene and eventually an amputation!!

We also so the nephrologist today too -- He didn't say too much because he felt like the rheumatologist took care most of the therapy plans. He did say that my boyfriend needs to increase his protein intake because the type of LN he has is the one that just "spills a lot of proteins." I asked the nephrologist if my boyfriend needed to be started on Lisinopril and he said not yet - especially when his blood pressure is so low! -- this makes us even more hesitant to start the Procardia XL that the rheumatologist prescribed!

Thank you all again for your input!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 11/24/2015 12:55 PM (GMT -6)   
Raynauds is one of those conditions that can be annoying or worse. If your boyfriends is severe then meds should be considered. If not, just adapt. There are smartwool (merino wool) glove liners that are comfortable to wear and surprisingly warm. Google them on line. I have raynauds and generally dress warmer than before but strangely, after 6 or 7 years it pretty much has gone away. As a lifelong skier (really die hard and once professional) it was initially hard to cope with really cold temps but eventually I found the right gloves/mittens/liners and unless it is colder than -10F I don't have a problem. Raynauds can also affect your toes.

Severe cases of raynauds can result in gangrene and loss of digits but if you understand what is happening there are ways to cope with it without drugs unless the case is really severe. I always had meds as an option but never took them for it for the past 10 years. If it is necessary have the rheumy consult with the PCP and home monitor BP.

It is a good sign he is responding to treatment. Just remember that autoimmune diseases are forever. No cures yet but many cases do go into remission.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 9:55 AM (GMT -6)
There are a total of 2,972,781 posts in 326,010 threads.
View Active Threads


Who's Online
This forum has 160853 registered members. Please welcome our newest member, afayth.
431 Guest(s), 9 Registered Member(s) are currently online.  Details
GoBucks, tickbite666, Katerina-b, 142, Sherrine, songlady, ChickenArise, NotQuiteAntonio, halbert