Class V Lupus Membranous Nephritis

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Crazy 8
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 12/11/2011 11:16 PM (GMT -6)   
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!

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/12/2011 10:38 PM (GMT -6)   
Pick me! I am one of the unlucky ones. What type of treatment of they using for you? You are more than welcomed to email me anytime you would like. I know how scary this can be. I have been on all the "lupus/kidney" medications and more. The only one we hadnt tried is Rituxan. Now I am on dialysis and its an adjustment but deffinatly bearable!!
 
Do you know what your creatinine, albumin, and BUN are?? Just curious :D
Amy
Lupus Moderater


dialysis from lupus nephritis

Crazy 8
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 12/13/2011 9:03 PM (GMT -6)   
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

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/13/2011 10:16 PM (GMT -6)   
Hey! Glad to hear your creatinine is normal. That is awesome. My question is you need to ask how you have stage 5 with a normal creatinine which is a great kidney function percentage? Very puzzeling to me. But awesome to hear!!!!

They started me for lupus treatment and I was on Imuran and plaquenil...i then went into acute renal failure a year after my diagnosis. They did the pulse steriods and then had me on pred of 80mg for about 6 months and slowly got to taper. After my first round of kidney failure they started me on cellcept with pred. I didnt tolerate cellcept well, don't want to go into all the side effects. but it wasnt pretty. So we moved to cytoxan. did that 8 months. I lost my hair from that and was on house arrest from a low WBC for 2 weeks outta the month. (my wbc would fall below 1) Then we moved onto Cyclosporine. Did great on that for about 15 months and I built up a toxicity to it. So they enrolled me in a clinical trial and we tried cytoxan along with Orencia (or placebo) Obviously it didnt work as i am on dialysis now! But if I would have known what I know now, I would have done things very differently.

I guess the worst side effect for me was gaining 100 pounds in about 3 years of high doses of pred and lots and lots of IV's of it. It changed how my body looks and isnt fair. The only way I really can deal with it is have a positive attitude. I was unable to work out for a long time as I had no energy or strength.

So I guess in total, I was treated for 3 years before daiysis after the kidney problems started. It normally doesnt progress that quickly AND people usually have an excellent response to Cellcept :D! So good for you :D and it sounds like they are going in the right direction. My tips for you...Listen to your doctors. Don't miss blood work when it is scheduled and if you do...go as soon as you can. Also, listen to your body!!

Please ask any questions you have. I will do my best to answer from my experiments on how things have effected me :D!
Amy
Lupus Moderater


dialysis from lupus nephritis

DeeDee50
New Member


Date Joined Jan 2012
Total Posts : 2
   Posted 1/30/2012 1:19 PM (GMT -6)   

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.


Crazy 8
New Member


Date Joined Dec 2011
Total Posts : 4
   Posted 2/1/2012 2:52 PM (GMT -6)   
DeeDee 50-Hope you are feeling better! Thank you for the tips on the diet I think I am going to try it as well and see if it helps me.  I went for a check-up and the meds are slowly working.  My kidney function level is normal and the protein levels are finally decreasing. I am taking Lisinipril which a high-blood pressure med that works with the Cell-cept to get my levels to normal.  Have you tried Cell-cept?  I know that it is easy on the kidneys so it has been one of the commom prescriptions for our diagnoses. I am sorry about your kidney function being low, are you on dialysis? I just read that the Lupus Moderator Amy is now on dialysis.  She has the same issues we have and she has been helpful giving insight throughout the process. I do have to say you are blessed not to have the body pain.  I was recently diagnosed with Fibromyalgia in November and I am medication for that now.  The body pain is severe and the meds just seem to subside it enough to get through the day.  I hope all turns out all right for you and that your kidney function gets back to normal.  Hang in there maybe we will be lucky and a cure will be developed soon.

luk4dgudnit
Regular Member


Date Joined Sep 2011
Total Posts : 26
   Posted 2/7/2012 12:00 AM (GMT -6)   
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.
luv4myself&people

wi_girl
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/25/2012 6:49 PM (GMT -6)   
I know this was posted a while ago, but I have a lot of questions, and am hoping some are still checking replies. I was just diagnosed with Class V Lupus Membranous Nephritis as well. I had a high level of blood and protein in my UA (not sure of the exact number) and my platelets have obviously been insanely low. Other than that, all other blood counts, blood work (creatinine, BUN,etc.) have been good (they've all been tested and retested about 3 times). I'm in the same boat as Crazy 8, I've been doing some looking online but the medical jargon either has me extremely confused, or really scared.

I was put on Prednisone to get my platelet level up high enough for my biopsy, but because they were so low had to treat it very aggressively (100 mg/day). So the 1 1/2 week I was on the high dosage is now going to take me almost 2 months to taper off from. I am having some serious side effects with the Prednisone (which have pretty much sent me into depression). I don't have my follow up for another week with the Nephrologist, but am just wondering what the alternative treatments are to drugs like Prednisone. My kidneys are functioning fine, and I am really hoping there is an alternative treatment that will either stop the progression or slow the progression before it gets to the point of affecting my kidney function.

Sorry there is probably a lot of rambling. My mind is all over the place, and I'm really scared to be on a maintenance drug like Prednisone for the rest of my life.

Any input would greatly help!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/25/2012 11:22 PM (GMT -6)   
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.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 4/26/2012 6:51 AM (GMT -6)   
Yes, prednisone is a must for nephritis. Usually the medications to treat nephritis are Cellcept, Imuran, Or Cytoxan along with prednisone. Of course, the more time you are on one of the three I mentioned, the more you will get to come down on prednisone. Also to control the protein, they typically put you on lisinopril.

If your doctor suggests Cellcept, I would ask about Myfortic. It is very similar to cellcept except it has a coating on it that makes it easier to digest. Regular cellcept can be very harsh on the GI areas. Best of luck to you but also make sure you follow your doctors orders. If you don't, this can be very severe.
Amy
Lupus Moderater


dialysis from lupus nephritis

Sammy123
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/27/2012 4:23 PM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/27/2012 7:18 PM (GMT -6)   
I have a mild protein spill and my doctor put me on lisiprol (sp?). It seems to have helped me. Also I was taken off all NSAIDS.

You want to take care of your kidneys. My brother didn't and he's on dialysis waiting for a kidney now.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 10/29/2012 12:02 PM (GMT -6)   
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!!!
Amy
Lupus Moderater


dialysis from lupus nephritis

Jbern7
New Member


Date Joined Jan 2013
Total Posts : 5
   Posted 1/4/2013 5:12 PM (GMT -6)   
Hi, I know this post is from awhile ago, but I am new to this site and thought I would share my journey. I was diagnosed with Lupus a year ago, all the docs told me it was a mild case and I would have no complications and was started on Plaquinil and all my joint pain went away immediately. Well, 3 months later and 10 days before my wedding I had to have a kidney biopsy due to a total urine protein of 3g. The results came back as Class V pure membranous nephritis - which all my doctors and specialists at Cedars Sinai said was the best possible type to have. My only kidney involvement was leaking protein. I was started on very high doses of Lisinopril, Prednisone, Aldactone, Lipitor and CellCept... and within a month and a half I was in complete remission!!! My urine protein is NORMAL for 2 months now and I am totally off the prednisone! My hair is totally destroyed and not growing from the cellcept but I guess that is a small price to pay! I have had no problems tolerating any of these meds (except for a few low pressure issues). The plan is to stay on CellCept for 1 year after remission date...so only 10 more months to go hopefully. I hope this helps some others with Class V that dont have BUN/Cr or RBC issues....

Shordeecat
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/19/2013 6:41 AM (GMT -6)   
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!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 12/19/2013 10:59 AM (GMT -6)   
Welcome Jbern7, Shordeecat -

The original posters for this thread haven't been seen here for almost 2 years, so I doubt you will find help from them. It may be most helpful to start your own thread introducing yourself and your issues & questions.

Best Wishes
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde
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