Class V Lupus Membranous Nephritis

Hello, I was recently diagnosed in June with Class V Lupus Membranous Nephritis, and I am looking to talk with others who have the same diagnosis.  I would love to talk to anyone who has this form of Lupus, apparently it is a rare form of Lupus so I am having a hard time finding anyone who has been diagnosed.  Would love to talk, send me a message or post if you can help in anyway!

 

Thanks!

I am so glad someone responded I was getting a little worried.  Well my protein levels in my urine were at 9.9 when the normal range is 1 so they started me on lisinipril 5 mg dailyto lower the level.  At the two check up the levels had dropped to 2.5 which is good but not in the normal range.  My Nephrologist also started me on CellCept which I just started this past Sunday, he is treating in increased increments. This week I am taking 500 mg twice a day, next week 1000 mg twice a day and the following week 1500 twice a day.  His goal is to use the medication to put the Lupus into remission.  He said it would take about a year to get everything stablilized.  So, after meeting with him my Rheumatologist has put me on Plaquenil 400 mg a day and since I am having severe body aches he added Prednisone 40 mg per day.  The medications are slowly working, I think.  I still have body aches especially in legs, arms and hands.  The joint pain is unbearable at times.  I try to take tylenol and they prescribed Hydrocodone when needed but I have limited myself to only taking it when I cannot stand the pain anymore.  I am also on Levothyroxine for my thyroid and 1200 mg of calcium.  I have been dealing with the levels being high since June but did not have this flare up until the beginning of November when my levels reached a ultimate high.  My creatinine level was normal and my albumin level low.  Not sure about the BUN but I have an appt. on Monday and I will ask about that one. I just turned 33 and I have a 19 month old son who keeps me busy but I feel frustrated when my body hurts so bad and I can't be the best mom I can be due to pain. I am so glad to find the forum and talk to someone who has been or is going through this.  I am concerned about the side effects of the meds, I am swollen and bloated all the time now from the predinisone, hopefully they will start tapering it down when the Plaquenil kicks in about a month or two.  If they can get the pain under control the rest would be ok to deal with.  Thank you so much for listening, I am sorry you are at the dialysis point now.  What treatments did they start for you? How long were they treating you before the dialysis? What meds and side effects did you have and how did you deal with the side effects?  Any information helps, I read up on it online but the medical jargon is impossible to comprehend, or at least it doesn't have any meaning to me right now.  Thanks and hope to hear from you.

Christy

Hi,

I was diagnosed with MPGN III 20 years ago and haven't talked with anyone that has that diagnosis since it is so rare.  I was 30 years old when I was diagnosed.  I had been treated conservatively with blood pressure meds and lasix for 15 years and then I started getting anemic and have to be put on prednisone periodically.  My kidney doctor always suspected lupus but I was not diagnosed with membranous lupus until two years ago.  I have had a flare-up for the past two years and have been on several meds including azathioprine, hydroxychloroquine and prednisone. The kidney doctor says if we can keep my blood pressure down and sugar levels in check it will prolong the need for a kidney transplant.  The last kidney biopsy two years ago showed declining kidney function.  I do have a lot of water retention.  I try to eat a low-sodium diet and I exercise.  I also try to not eat sugar, flour and red meat.  I don't have pain in my joints like a lot of people complain of.  Let me know if you have any questions for me.

I'm about to undergo a biopsy of a lesion on my kidney. The doctor thinks it has something to do with lupus. Its sad that my pain management M.D. is treating me. The rhemy I go to is a quack. She wants to charge an arm and a leg and not listen. I ache everyday. My joints hurt profusely. My head hurts and after about a day or two turns into a migraine. I showed her pictures of my hand when its the bluish color and pictures of the hairloss. I personally believe because I don't crawl into the office, drooling, with uncombed hair that the rheumy doesn't take me seriously. I'm so frustrated. I think I may even be scared that by the time everything is truly diagnosed I'll be dying or need dialysis because the rheumy is busy with her trial and error notions. I have had eleved creatinine and protein in my urine for over two years now. I experienced a rash before open heart surgery and never was told it could have been a lupus rash. I was most recently told that the lesion in my heart could have been some type of cardio something another that's owed to Lupus. This Lupus thing is bothering me to no end. I'm trying to look for the good in it but its hard.

My self diagnosis based on my symptoms is Sjogren's syndrome, Fibromyalgia, some type of arthritis, Lupus to go along with the slipped disc in my back, the degenerative joint disease and the carpal tunnel I was diagnosed with years ago. I even wonder if the TMJ has anything to do with these headaches. I'm a magnet for pain related symptoms. It's even harder I can't talk to anybody about it because they don't understand.

wi-girl,

Prednisone is for controlling inflammation...which I don't think is the issue with lupus nephritis. Generally Plaquenil is more of a 'controlling' medication, in that is seems to slow the progression of lupus. However, most of us here, myself included, have more experience with systemic lupus than with Membranous Nephritis. (Although we do have some with kidney involvement, maybe they can tell you more.) I believe the inhibiting medication for the kidneys is Cellcept.

Hopefully one of our more kidney-aware members can give you more information soon.

Hi. I've recently had a repeat kidney biopsy done and turns out I have Lupus nephritis, class 5. Protein leak is a major issue but my kidney function overall seems to be 100%. When I saw the doctor and she explained the results to me, she started explaining to me the different approaches we could take to help reduce the protein leak. She mentioned a blood pressure tablet, and then cyclophosphamide and cyclosporin. After hearing all the possible side effects of cyclosporin I got overwhelmed and started crying in her office. Probably because of that she suggested ramipril to me about a week later. Has anyone been prescribed this drug in order to put a control on the amount of protein leaking from their kidneys? I would appreciate it if someone could get back to me. If it doesn't work the doctor suggested cyclosporin which I'm terribly scared of starting. If anybody could give some comments about that drug as well that would be great. I'm already on cellcept or mycophenelate, prednisolone, plaquenil and folic acid.

I was glad to see that there were so many posts relating to Lupus nephritis and would appreciate it if someone could get back to me asap since i'm looking to start this drug (ramipril) in the near future.

Samrah, 19 years old

I was on cyclosporine for 15 months and it was my miracle drug. it worked wonders for me. i was also on cyclophosphamide, which perosonally would be the one I would be more worried about. I had few side effects from cyclosporine until I built up a toxicity to it.

What are your fears in the drug? And I agree with Joy...you really need to take care of your kidneys, follw what your dr's suggest and if you aren't happy, get a 2nd opinion. Also, sometimes even doing everything they say, you still have a chance of progressing to dialysis, which isnt the worst thing in the world, trust me, I know!! Been on it a year now!!!

Crazy 8

I am almost in the exact position as you in 2011 right now. I was wondering how you are doing now and if there are any tips you recommend. Anything would be helpful. Thanks!