Hi all, thanks for the warm welcome to the site. Is there anyone who have LN that can share their experiences with me? I was only diagnosed two months now and I'm still in the learning process. Hearing what others went and are going through would definitely put a lot of my worries at ease. I'm on cellcept, plaquenil, ramipril, steroids and sometimes lasix for the feet swelling. The meds alone have me feeling like a walking zombie but i'm coping. Anxiously awaiting replies!
Harriette1
It depends on the extent of your kidney disease as this can have a lot of complications and of course permanent damage to your kidneys I had it with severe disease by biopsy and was in a nephrotic syndrome for several years Treatment was rough as kidney disease is a reason for very aggressive treatment and some of the drugs are as bad as the illness. My treatment was successful and 30 years later I still have functioning kidneys so hang in there
Welcome Harriette. The people here are really great, caring, and supportive. In a short time they took me from feeling so alone and isolated to knowing I was understood and welcome. It's my home away from home.
I understand your kidney issues, but do not have that diagnosis. My GP refuses to send me to a specialist despite history and extremely high blood pressure issues not caused by coronary artery disease. It's frustrating, so am looking for a new primary, and to get in to a rheumatologist again. Fired mine. LOL.
There are several people I'm aware of who have nephritis, including whathappensinvegas, right off the top of my head. To find any previous discussions, go to the main page, and type the word kidney into the search box. It will bring up any discussion on that issue.
Again, welcome to the Life with Lupus family, and I look forward to getting to know you better.
hugs, Perplexed.
Thanks all, for some reason as soon as one hears kidney its just that feeling like a death sentence. I appreciate the encouragement!
Hi Harriette1,
Welcome to the website. Mine is a long story. I will shorten it for you. For many years I was diagnosed with a general form of Nephritis. Up until my recent kidney biopsy in February was I specifically diagnosed with severe Lupus Nephritis. I am a 43 yr old woman. Have been on Cellcept for 8 years. It worked wonderfully on me in the the beginning, but recently lost its' effectiveness and the Nephrologist wants to up the dosage. I refused the Plaquenil about 2 years ago and starting to think it was a mistake.
So, I think some of the important things to know are: Are you aware of your creatinine numbers? Did they explain the importance of this to you. Are you experiencing loss of protein through urine due to damage in kidneys? (normal range of loss for people without nephritis is >200, mine has ranged between as high as 7,300 down to 1,200 and anywhere in between. From my understanding if they are able to control the loss of protein through meds that will help to keep your cretinine in check. Its important to note that the function of the kidney (measured by your creatinine levels) is your first question when having check ups with your Nephrologist. Then loss of protein. Blood levels of cholesterol should be monitored as well. Is normal to be a little elevated as a LN patient.
I was very encouraged by reading a response from Poobie here on this website that she has been able to avoid dialysis for 30 years. That is so awesome!!!!
Avoidance of sun and heat have helped me this summer. It took me along time to come out of my denial that I could no longer worship the sun and warmth but it is my new normal. It's also recommended while on Cellcept.
This is a great place to share, learn and support one another...WELCOME!!!
I do have protein in my urine, the test results show protein +3, my blood pressure has always remained normal and I have swelling in my ankles (that was my first sign that something was going wrong with the kidneys). I am seeing my rheumy on Tuesday and I'm guessing that all the blood work and test results would be back by then that would give me a better understanding of what is going on. Apparently the only side effects I'm having on the cellcept is acne and every other day I go to the bathroom, my stool is soft but I still wouldn't call it diarhea.
Yeah, its really great how how Poobie was able to avoid dialysis for those amount of years. Since being diagnosed with LN is have changed my diet completely. I've gone on a low low salt, eliminated sugars (no sodas, cakes, chocolate, etc), as for milk, I stopped using dairy and use only Almond milk and I've included more fruits and vegs. By doing this I realized that although I was on steroids, I lost weight. I guess a change of diet really makes a difference.
I will keep you guys up to date when I return from my Rheumy on Tuesday. Should have more information then.
Hugs!
When my son was 3 .I was diagnosed with Lupus Nephritis. I had the same symptoms you had. For 2 yrs I was given IV Cytoxan & Ritaxin that put me in remission for yrs. I now take Cellcept, Prednisone & occasional IV steroids. I've had lupus for 20 yrs, the kidneys are still functioning. My kidney biopsy showed Mesangial Nephritis that responds to steroids & immune suppressors. I have frequent urinary tract infections & I take Macrodantin daily to prevent them. Hope this is helpful
Yes!! Change of diet can positively impact our condition. Staring in January I added Zumba/yoga classes 3-4 x/wk as well as nutrient extraction smoothies. I am receiving so many benefits as well as stress management, weight loss from both changes. I go months at a time doing good with low sodium and then cave on the occasional craving. I was a true milk lover all my life and two years ago I just gave it up and went to rice and almond. But I’ve read some recent research on the almond and have to eliminate it. So, have used some coconut milk. I also am about 80% vegetarian.
*starting
I have Lupus Nephritis. I am also on Cellcept, Plaquenil, Lisinopril and finally am weaning off of Prednisone! The only drug I've ever had problems with is the Prednisone! The wood swings and weight gain are the worst! But luckily my kidney function is at it's best... the best it's been in years! Only .1!! :) I just turned 29 yesterday and was diagnosed when I was 18. It's possible to live a "normal" life, but you have to always remember that your health comes first, no matter what. All you can do is listen to your body and build a good relationship with your doctors!:)
Saw my rheumy today and got back test results. My blood pressure as always is normal, my creatinine is good (she didn't give me the numbers, just said it was good) and here comes the shock! My 24 hour urine collection showed that I was spilling up to 6 grams of protein (boy were my kidneys spilling, lol). When I got to her office my ankles were so swollen that they looked shiny and bloated. My rheumy said, wow those are puffed! She doubled my lasix dosage. I had a spot urine test and further blood work done. Depending on the blood results, she will determine if I will have to be admitted to the hospital for further test. I'm guessing this would be to do the kidney biopsy. Overall, I was really excited about the creatinine results, it actually put me in a better frame of mind. Just praying that my feet would stop swelling every day.
I'm happy you're getting treatment for your Lupus Nephritis. Sounds like your Dr is right on top of it, which is good & your Kidney function is good which is excellent. Most cases of Lupus Nephritis respond well to Steroids & Immune Suppressors. My whole body got puffy too due to protein loss. I'll pray you get stable & feel better soon
Thanks OC GAL. How long did your puffiness lasted and were you on lasix also? Everyday I keep telling myself the lasix isn't working, I guess I need to give it more time or as you said wait until the protein stablize. Going to work is stress because I can't get my feet in the shoes although they are toes out
I was on Lasix but I was spilling so much protein I looked like someone used a pump to blow me up. Everyone @ work kept asking me what was wrong with me I looked so swollen, I couldn't put my shoes on, my feet were so swollen. I had to take off work I was very sick. I remember having massive doses of IV steroids & IV Cytoxan. I was on the verge of kidney failure & starting dialysis. You probably should be off work to rest your kidneys & body. Nephritis is very serious. I don't want to scare you but your symptoms are what I had. I kept working because I just started a new job with more responsibility in a co I had worked 5 yrs. My promotion was a salaried position & I didn't want to lose it. Have you had a 24 hr urine for protein? You need to listen to your Rheumatologist & do what they say, even if u don't agree. I'll be praying you go into remission soon.
It's only from my ankles down that are constantly swelling and I haven't been sick at all, even before or after diagnosis. I'm a teacher so most of the time I do a lot of sitting and try to put up my feet. I did have the 24hr urine which showed at the time that I was spilling 6 grams of protein. Since then I was put on ramipril. I was on sick leave for the entire month of July only went back to work on Aug. 05. I'm always in close contact with my rheumy, anything that pops up in any testing she would call me at home or on my cell. Thanks for the prays and I too hope to go into remission soon.
My kidneys had shown up on a PET scan, after finding that they did a biopsy of the kidney and diagnosed me with interstitial nephritis. They at first thought it was from the protonics I was taking for my ulcers but they have now ruled it to be from the lupus. After the findings they put me on decreasing prednizone for a month. When I went back my kidneys had actually worsened. So they did two days of high dose IV steroids which brought my levels back up. So far I haven't had any major issues.
Louters I'm glad you feel better & I hope your Nephritis isn't from Lupus. Since I've been on Rituxan in a clinical trial I've been stable. I did have Interstitial Nephritis & Sepsis requiring hospitalization once but haven't been hospitalized for quite a while. I did have ssDNA at the time I was first diagnosed but not since that confirmed Lupus Nephritis as well as the biopsy. Sounds like your nephritis is treatable like mine which is good. I hope you remain healthy & the nephritis goes away.
Hi Harriette,
I have moderate/severe LP. In fact it was the biopsy on my kidneys that showed I have SLE as I am ANA neg. I don't know what some of those meds are that you are on, but I am on Pred, Plaquenil, and Cellcept. Benlysta is not an option for me. After a very short time the prednisone started kicking in and I was actually able to finish a sentence. 8 months after starting treatment my protein levels, while still high, aren't doing the damage that was being done.
A couple of things with the kidneys that I didn't know until I started seeing my Nephrologist...kidneys are a regulator of bp. If your blood pressure is going way up or way down, your kidneys could be the cause. Also, because damaged kidneys spill protein, you could likely not be getting the nutrition that you need by eating everyday foods, especially iron. I was severely anemic and after some iron treatments got that a bit better, however I am anemic again. When I am anemic I feel as if I am walking through quicksand and it takes every muscle in my body just to move my legs. My husband has also pointed that I am having difficulty with finishing sentences, sleeping a LOT, and things that I was doing before the iron treatment.
This is just my personal experience with it. Every person is different and every person has different degrees of damage to their kidneys.
I wish you good luck and good health,
DeAnne
I saw my rheumy last Tuesday. Protein in the blood is low (which is only obvious since I'm still spilling protein) but the creatinine clearance is normal. She up my lasix by 1 and 1/2 and then I had to get another pulse methylprednisone x3 increased. Seeing that its only about 2 months since i've been on cellcept, she said to give it time before deciding to move on to another treatment. My rheumy really don't want to use the chemo (cytoxan), said it has too many bad side effects. Statistics show that sometimes cellcept takes about 6 months to be effective and so far i haven't had any bad side effects with it, so I'm really praying that it works for me. Really scared about cytoxan.
I'm happy your doing better Harriette. I've been on 1,000 mg of Cellcept a day for several yrs. I've not had any problems & it seems to keep my Kidneys healthy. Every once an awhile I have blood in my urine but not near the symptoms like before. Sounds like your on the same treatment I had except for Cytoxan. The only symptom I had with Cytoxan was bladder irritability. I'd get it on week end & work PT during week.