Kidney improvment

Momof1 · Sea Monkey Joined: 13 Sep 2005 Posts: 14

Hello there as I have said before I was diagnosed with lupus 4yrs ago and lupus nephritis in july of this year I was spilling out 6,786 of protein I was started on Cellcept and they boosted my prednisone and I went to my doctor the other day and found out my protein is down to 2,486 YAHOO he says the medication is doing its job, i was wondering if anyone has had a similiar case? do things just keep getting better or can they get worse? if anyone could help please let me know.
Thanx
Mary

Gabogunrin · Newbie Alert Joined: 29 Sep 2005 Posts: 3

Around october, I had over 6000mg of protein in urine. I had to go through six cycle of cytoxan. now i have less than 1g I mean less than 1000mg. Now i tell cellcept and honestly, I could feel better and I'm starting to have my energy back

catlady4520 · Posted: Thu Oct 13, 2005 5:51 pm Post subject: Cellcept

What kind of side effects do you get with Cellcept? I'm going to take it after I finish the Cytoxan for lupus of the brain. I'm kind of nervous to take it because I'm having a tough time with Cytoxan right now and would rather not have to take an immunosupressant.
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Catlady4520

Momof1 · Sea Monkey Joined: 13 Sep 2005 Posts: 14

Hello there thanx for the responses I dont really have any side effects from the cellcept now I refused the cytoxan so they told me that cellcept was a safer but less as effective drug but I didnt care I thought it was worth a shot, and its working, so I am glad I did.
Thanx
Mary

Editor03 · Posted: Fri Oct 28, 2005 4:32 am Post subject:

Hi Mary,CatLady, and Gabogunrin,

I am new to this forum, but having just recently lost a kidney to SLE, have been referred to a nephrologist. Unfortunately, due to area nephrologists not taking my insurance plan, I have to travel about 150 miles to visit my doctor. I have an appointment to see him in about three weeks, and because of your posts about the two medications that you have had experiences with, I feel that I am "armed" with info to question him with. I'm not sure what to expect because I was told by my internist that I cannot take most of the drugs available for SLE because of my kidney involvement and running the risk of damaging my remaining kidney. What I was wondering is this; has anyone here lost a kidney and what are they being given, if anything, to ease the pain and fatigue symptoms? Thanks everyone and have a fun Halloween! Twisted Evil

Paula
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"It is the unknown that we fear when we look upon death and darkness."~Albus Dumbledore

Missy · Posted: Fri Oct 28, 2005 6:06 am Post subject:

Hello all -

I also have Lupus Nephritis and less than two years ago my proteinuria was about 5000. I also was told after trying Cellcept for 6 months that Cytoxan was my only option, as my protein was only down to 3000. I held out and had a kidney biopsy done, and the Cellcept must have kicked in again, because now I am down to half the Cellcept I was on and have proteinuria less than 100 - in the NORMAL range. I was told Cellcept isn't necessarily less effective than Cytoxan;it's just there are more studies involving Cytoxan because it's been around a lot longer. I've really only had some upset tummy - I call it medicine tummy- with Cellcept.

As for "losing a kidney" - a lot of people think that only one kidney at a time is affected by SLE; however, several nephrologist have told me that is not the case. If we have SLE, it is in our whole body, so is not acute like another kind of kidney disease to one kidney. You may have 50% kidney function, like I did, but that doesn't mean that only one kidney is working. Generally, they both are, just at less than normal. The only way to know one whole kidney was not working at all is to have both of them bioppsied, which I don't think nephrologists do for the reasons I say above(plus, believe me, one kidney biopsied is enough!). Hope this helps and good luck at the nephrologist - it's really nice to see an MD that actually knows a lot about kidney health.
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Missy

Editor03 · Posted: Fri Oct 28, 2005 7:01 pm Post subject:

Thank you Missy, for the post. In my case, I had surgery to try and save function in my kidney. Afterwards, they did an IVP and discovered that there was absolutely no venous blood flow to the affected kidney. Then they hospitalized me, did an angiogram checking for arterial blood . . .all to no avail. The problem with me now is although I still have the kidney in my body, it is extremely shrunken and has resulted in Goldblatts Hypertension, which is so severe that even taking three high blood pressure medications, it is still high and out of control. I have just recently moved here, but my previous nephrologist told me that the only way to bring down my blood pressure and prevent a stroke, etc. is by removing the shrunken, non working kidney. In the meantime, I have seen my internest here three times in five months for an infection involving my good kidney. This is, of course quite worrisome and I believe the nephrologist will have no option than to remove the kidney. I appreciate your help! Thanks, Paula
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"It is the unknown that we fear when we look upon death and darkness."~Albus Dumbledore

kiwimitts · Posted: Tue Nov 22, 2005 11:22 am Post subject:

Hi. I have lupus nephritis too and have been on cellcept for 6 months with no improvment. Can you all tell me what dose you've been taking? I went to the Mayo Clinic and they said I should take no less than 2,000 mg per day but at 750 I vomit constantly. Any ideas/suggestions?

Fiorny1 · Member Booted Joined: 01 May 2006 Posts: 4

I was diagnosed with lupus and sjordens disease at 16 yrs of age, Now at 32 I am still battling this disease. I say battle because that is what you end up doing. You end up many of times forcing yourself to do things, and admit it is not easy. I advise all the newly diagnosed with SLE to try to keep a positive mental outlook...that you will better. I found that having lupus you have to be positive, if you get sadly depressed, the disease then conguers you and you will get sicker....AND also I found by my little research, having a ALL Vegetable, Organic -non processed , non meat diet helps SLE especially with kidney disease! Many people that have SLE have actually gone in total remission and are able to have normal healthy lives.....and there are plenty of books on that. This diet is called VEGAN diet, so look it up!