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andyman
08-23-2005, 04:25 AM
I hope I'm posting this in the right place. I wanted to hear from anyone that has kidney involvement. I've been having a fairly hefty flare lately. I'm back on prednisone etc. and I'm losing a lot of protein. I'm wondering if anyone has had success with certain meds or anything else to help the kidneys.

Thanks!

SoleSinger
08-23-2005, 08:30 PM
Hi!

I have lupus nephritis too... I have only been on meds for a little over a month, but, I know that my blood protein levels are slowly going up... 1.0 -1.8 albumin level in a month... went from dumping 5grams of protein to 3grams... So, I THINK they're working...

I'm on Prednisone, Cellcept, Lisinopril, Cozaar, Synthroid, Zocor.... and then Lasix and Metolozone for my water retention...

Let me know how things work out for you!!

andyman
08-24-2005, 03:28 AM
It sounds like what you are diong is helping. Going from 5 gms to 3 gms is a real improvement. My last 24 hour test had me at about 3.5 gms. I go to see my Nephrologist next week so we will see.

Question for you on the Cellcept. I've taken it before and it didn't seem to be doing much. How much are you on and do you think it's helping?

Thanks,

Andyman

SoleSinger
08-24-2005, 07:21 AM
I'm on 1000mg/day and I have actually only been on it for about two weeks now, due to financial reasons. So, I won't know really until my next appointment in September... But, I'll keep you posted!

Missy
08-24-2005, 06:55 PM
Hi - I have lupus nephritis also, and have been on Cellcept since Dec. 2003. I also take Prednisone and Lisinopril. The first six weeks on Cellcept I saw a big improvement 4+ grams protein down to 3 and Creatinine 1.9 down to 1.3. This was on 2000mg a day. Then I kind of plateaued and a few months later my nephrologist wanted me to start Cytoxan. I was able to delay it until after a biopsy and due to the results from that and Lisinopril helping, we saw another improvement. I am now down to 5 mg Prednisone and 1000 mg Cellcept a day, as well as 40 mg of Lisinopril. My protein levels have been less than 300 for the last 5 months and my creatinine 1.0.

So, things have been working out. I just hope they stay this way for a while. My biggest problems now are fatigue and anemia, and I am taking ProCrit to help that.

dandoon_88
08-25-2005, 12:56 PM
hi, i have lupus nephritis too..dx'd a year ago
i've been on cellcept and prednisolone since..i currently take 5 mg prednisolone and 1500mg cellcept but after my last tests the doctor said i should take 2000mg of cellcept instead. (urine protein increased from 1 gram to 3+, albumin level fell to 2.3) i'm quite worried why this happened..but i think cellcept is quite good..i havent had any problems since last year..good luck!!

andyman
08-26-2005, 03:34 AM
Tnanks!

Andyman

*Sara*
09-13-2005, 07:38 PM
I take Avapro, lisinopril, prednisone, and plaquinel

Suzyq
09-14-2005, 12:14 PM
Hey Andy---Thats how I found out I had lupus 20 or so years ago.Got up one morning,looked in the mirror and FREAKED out.I was so swollen.My hands and feet were horriable too.Went to the doctor and the first tests they did was showing kidney failure.Didn`t take long at all to see it was lupus.Had the biopsy and they put me on cytoxin and 80mg ofpred.Also told me complete bedrest for awile and absolutly NO salt.I couldn`t tolerate the cytoxin so they put me on Imuran and kept the pred. fairly high for about a year.Finally got over it for the most part but they still keep a close eye on my kidneys.Say because I got in such bad shape back then my kidneys don`t have full function.Have you had a biopsy? Rember cut back on the salt. Good Luck!!

Momof1
09-14-2005, 03:05 PM
Hello there I am going through kinda the same stuff right now in july i had my regular blood and urine tests the tests showed i was spilling out 6,000 protein which then i was sent to a kidney specialist he did a biopsy right away said i had class 4 lupus he started me on 60mgs a prednisone and last month started cellcept 2,000mgs a day in a little over a month my protein is already down in the 3,000 markings my prednisone is down to 30mgs and goes down 10mgs amonth i also take plaquenil 400mgs a day so i think things are getting better here hopefully they get better for you.
Good Luck
Mary

andyman
09-15-2005, 04:19 AM
Suzyq and Mary:

Yes, I have had 2 biopsy's. One about 5 years ago and 1 about a week ago. The tissue was membraneous, which is the better of the kidney problems to have. I am already on prednisone and plazquenil. My kidney guy also has me on Diovan, which is a blood pressure medication. I don't have high blood pressure bur evidently the Diovan dialates the smell veins in the kidneys and that prevents some protein loss. I think it is helping. I'm also going on Cellcept.

The bigest succdess I've had with protein loss was a really strict diet of nothing but raw fruits and vegetables. It was very tough to follow but it helped trememdously. So, I'm working on getting in that type of diet as much as possible while experimenting researching and experimenting with other foods so I can arrive at a diet that works and that I can follow without becoming a monk.

Andyman

Momof1
09-15-2005, 05:07 PM
Andy
Hey there so what kind of diet are you talking exactly just fruit and veggies werent you hungary? i was told as long as you watch your protein salt and potassium intake it will help the kidneys, how do you watch the salt though did you ever read labels there is salt in everything and alot of it at that, so you had to have another biopsy? so there is a chance that i might have to go through that again didnt it hurt, i know i was scared so it didnt help matters plus i seen the needle that they were putting in my back, i didnt realize people get more than 1 kidney biospy, well hopefully you are doing well.
Mary

andyman
09-16-2005, 04:30 AM
Mary:

Yes, the raw fruits and veges diet is a chore to follow. What I do now is try to eat as many fruits and vegetables as possible and limit my animal protein. I never really paid much attention to salt until recently and I think you do have to watch it. There is a lot of salt in foods. I also eat organic foods as much as possible.

As far as the biopsy goes, I had one 5 years ago and I had switched nephrologists. My new doc got hold of my original biopsy. He told me that in some cases things can change over time, particularly with active lupus and mine was being very active. So, he thought it was a good idea. The biopsy itself is not a huge deal. I've had much worse going to the dentist.
The needle they use is a bit scary looking but the site of it is more scary then the end result.

I wouldn't worry about another biopsy right now unless things change for you dramatically. You can always ask your kidney doctor about it.

I am doing pretty well. I'm on the right medication and working on getting through this. I hope things are well with you too.

Andy

Momof1
09-16-2005, 05:35 PM
Andy
Hello there hopefully your diet is going ok i was wondering when you are on that diet what do you drink? I use to drink diet soda all the time till about 3mnths ago when I started having alot of kidneys problems i actually cut it out completely no more carbonated beverages at all i drink pretty much water or crystal light, i was hoping that it would help my kidneys whats your view on this? my doctors said carbonated beverages are actually no good for anyone, well tahnx for listening.
Mary

andyman
09-16-2005, 06:01 PM
Mary:

As far as what to drink, the best I've found is plain old water. The diet soda has aspartame in it, which is actually pretty nasty stuff. The Cyrstal Light is still going to have sugar or aspartame in it.

One thing you can try is go to the health food store and get something called Stevia. You can get it as a liquid extract or a powder. I kind of like the extract. It's an herb and it's a natural sweetner. Sometimes I will take a glass of water and squeeze lemon into it and then add some Stevia and I get lemonade. It takes a bit to get the taste just right but it's pretty good and not bad for you either.

I hope that helps.

Andyman

SoleSinger
09-17-2005, 08:30 AM
Splenda is a great sweetener! Not a chemical like aspartame, and it tastes good, too...

andyman
09-18-2005, 04:50 AM
Actually, there is some research out that indicates that Splenda is not what it is cracked up to be. You can look it up on the internet as well as looking up "sucralose".

I was acrtually very excited about Splenda when I first heard about it from a nutritionist. Since other data has come out though I have stopped using it.

I still think that it's better than aspartame. However, Stevia is an herb and nothing more than that so it is a safe sweetner.

Andyman