Newly DX Lupus Nephritis

One of our moderators here has it. I believe she is on dylesis.

I hope she can answers your questions better than me.

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 :)!

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 :)!

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?

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!

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!