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ganesha
11-14-2006, 10:52 AM
Today I talked briefly with my nephrologist on the phone to discuss my biopsy results. It was as I expected and he said I showed signs of Stage 3 and stage 5 nephritis. He said that the stages are not really a progressive thing, and that having stage 5 is not really worse than stage 1, but just different. Is this how you all understand it as well?
Fortunately it is still in the very early stages as my creatinine level is .8-.9 which he says is normal for people, but since I am in a wheelchair and have less muscle mass my levels actually generally hovered in the .5-.6 range. So I have to go in and see him in a couple weeks to discuss medications further, but he said that cellcept is the most likely course of treatment.
So I am wondering what the stages actually mean and I would like to get more detail on them before I return to see my nephrologist. Does anyone have any great links that discuss this a little further?
Thanks for your help,
Brent

Saysusie
11-14-2006, 03:44 PM
Here is what I found out:
"Nearly all forms of acute glomerulonephritis typically progress to chronic glomerulonephritis. The condition is characterized by irreversible and progressive glomerular and tubulointerstitial fibrosis, ultimately leading to a reduction in the glomerular filtration rate (GFR) and retention of uremic toxins. If disease progression is not halted with therapy, the net result is chronic kidney disease (CKD), end-stage renal disease (ESRD), cardiovascular disease, and death."

Stage 1: This stage is characterized by kidney damage with a normal GFR (>90 mL/min). The action plan is diagnosis and treatment, treatment of comorbid conditions, slowing of the progressing of kidney disease, and reduction of cardiovascular disease risks.

Stage 2: This stage is characterized by kidney damage with a mild decrease in the glomerular filtration rate (GFR) (60-90 mL/min). The action plan is estimation of the progression of kidney disease.

Stage 3: This stage is characterized by a moderately decreased GFR (30-59 mL/min). The action plan is evaluation and treatment of complications.

Stage 4: This stage is characterized by a severe decrease in the GFR (15-29 mL/min). The action plan is preparation for renal replacement therapy.

Stage 5: This stage is characterized by kidney failure. The action plan is kidney replacement if the patient is uremic.

Let m know if this answered your questions or if you need more information!

Saysusie

ganesha
11-14-2006, 04:35 PM
That seems a bit different from the impression I got. Since my kidney function is good and we caught it early, I felt a little safe, but the above says that things are more serious. Thanks so much for the information. I have some more studying to do. I guess the upside is I dont have stage 4. Its all about perspective really.
Thanks
Brent

MARYCAIN
11-14-2006, 04:43 PM
Brent and Saysusie - I'm not sure these are the same "stages" your doctor was referring to - he might have been referring to the stages in the WHO classification system for lupus nephritis.

World Health Organization (WHO)
Classification System for Lupus Nephritis

I Normal - No evidence of lupus nephritis on the kidney biopsy.

II Mesangial Nephritis - Most mild form of lupus nephritis; typically responds completely to treatment with corticosteroids.

III Focal Proliferative Nephritis - Very early stage of more advanced lupus nephritis;
typically treated with high doses of corticosteroids, with excellent outcome.

IV Diffuse Proliferative Nephritis
Advanced stage of lupus nephritis with definite risk of loss of kidney function; typically treated with high doses of corticosteriods combined with immunosuppressive drugs.

V Lupus Membranous Nephropathy
Generally associated with excessive protein loss and edema; typically treated with high doses of corticosteroids, with or without immunosuppressive drugs.

This is what my nephrologist is referring to when he talks about stages - I have mixed stage 4/5 treated with IV prednisone and cytoxan. Cellcept is very effective for most people but I had a reaction to some of the trace ingredients in the drug, so cytoxan is better for me. I am not sure what exactly the GFR measures - the labs my kidney doctor generally reviews are creatinine, BUN, and serum electrolytes.

Here is a link to an article about kidney disease in lupus that might help

www.lupus.org/education/brochures/kidney.html#1

I guess the best answer is to ask your doctor to explain exactly what he means in plain English! :?

ganesha
11-14-2006, 04:58 PM
Mary,
I was thinking that those stages didnt seem to be what my Dr was talking about, so thank you for that clarification. I think you are on the right track, and I will revisit that information and absorb it. I am much relieved by the difference in the 2 sets of "stages". My doc is Indian, but speaks great english:) But specificity of words can be tricky.

And one other note, I have just returned to the forums here after a little absence, and I can tell already that you, Mary, are a very well educated, wonderful source of information. Not to take anything away from all the wonderful people here, but you have stood out in my readings of threads. Susie is always a wonderful voice to hear from as well. Thank you all.
Brent

SoleSinger
11-15-2006, 03:47 PM
Brent,

I also have stage 5 Lupus nephritis and how it was explained to me was that stage 1 is less severe than stage 4 BUT stage 5 isn't necessarily more severe than stage 4. It can range in severeness but the only reason it's called stage 5 is because it isn't like any of the other stages, really!

Who is your nephrologist? If you don't mind me asking... I go to university hospital's renal clinic and rheumatology clinic, and I think they are doing a great job with me!

If you want to talk, pm me!

Saysusie
11-15-2006, 04:33 PM
Thanx for the clarification MaryCain and Solesinger.
Brent, I hope that the clarification put your mind to rest a bit :lol:

Peace and Blessings
Saysusie

ganesha
11-15-2006, 10:22 PM
Yes my mind is much more at ease:) Thanks

My nephrologist is Dr. Singh with Western Neph. I really like him. I still dont like my rheumy, but Singh is great. He mentioned that Cellcept would be the likely course of treatment, but did not mention prednisone. Would love to avoid that, but well see. Fortunately my uncle is a nephrologist in Indiana, so I will have him looking over everything as well.
Still planning on trying to make it to a meeting here soon.
Thanks everyone,
Brent

SoleSinger
11-16-2006, 12:53 AM
I'm on CellCept Plaquinil and Pred... Also for my kidneys the put me on Cozaar and Lisinopril (BP meds) Because apparently they keep the protein in your blood.... They have taken me off of them because my BP was TOO low (67/30) And I have noticed the swelling coming back... I just hope that the protein stays where it's supposed to! I really don't want to go on the BP meds again... As for prednisone, I think I'm the only person in the world that WANTS to stay on that med! LOL I'm a singer, and once I started pred, my range was so much better! It just opened everything up!! It's great!!! I have dealt with the hunger and other side effects... I just love how I SOUND so much better!!!

Western Nephrology, that's in Boulder, right? I think my friend Nikki, who also has stage 5 Lupus nephritis, goes there! :)

Okay enough babbling from me!

Missy
11-18-2006, 07:53 PM
I have Stage 4, too - definitely the WHO stages, that's how my nephrologist refers to it as well.

I have been on Cellcept for almost 3 years. Also Lisinopril and have weaned off the Prednisone!

Solesinger - I also am havign to watch my Lisinopril because of low BP. Feels so wierd since it was so high at one time. I've reduced my Cellcept to 500 mg a day. My goal is to get off all my meds but Plaquenil. How ever last week my labs said my Creatinine went up to 1.2. It had been at .9-1.1. So, of course, now I'm worried......

I had a sinus infection and was on antibiotics (had a bad tummy from the first one so we switched) and read afterwards that the first antibiotic - a Sulfa drug can cause flares in people with Lupus. So, I'm wondering if that started my flare....anybody had that happen? I might have learned something a little too late.

MARYCAIN
11-18-2006, 09:16 PM
Missy, sulfa drugs can definitely trigger a flare - in fact, some people develop lupus symptoms for the first time after a sulfa antibiotic. Most rheumies know about the sulfa connection but not all GPs do, so you should always ask about any antibiotics you take. One other caution about antibiotics - many of the stronger ones like vancomycin and gentamycin are "nephrotoxic" - meaning they can damage your kidneys, so they can be a bad idea for someone with lupus nephritis. I found this out the hard way when I was given vancomycin for a staph infection and developed kidney failure as a result. Fortunately I have a great nephrologist, but it was bad for a while! But now I'm very paranoid about antibiotics, and ask lots of questions before I take them.

SoleSinger
11-19-2006, 02:02 PM
Solesinger - I also am havign to watch my Lisinopril because of low BP. Feels so wierd since it was so high at one time. I've reduced my Cellcept to 500 mg a day. My goal is to get off all my meds but Plaquenil. How ever last week my labs said my Creatinine went up to 1.2. It had been at .9-1.1. So, of course, now I'm worried......

I had a sinus infection and was on antibiotics (had a bad tummy from the first one so we switched) and read afterwards that the first antibiotic - a Sulfa drug can cause flares in people with Lupus. So, I'm wondering if that started my flare....anybody had that happen? I might have learned something a little too late.

Yeah, I've had a terrible time with my BP they had to take me off all the BP meds and diuretics because it was causing such problem with my BP... But once I was off of them my BP wouldn't stablize it was WAY low then WAY high But mostly it stayed low even off the drugs... So they gave me something to raise my BP and then it went TOO HIGH! (170/110) UGH I feel like I can't win! I've passed out due to having such a low BP and sometimes it makes me so dizzy I can't drive (Typically when I am trying to leave somewhere I've gone. But since I was put on the med to raise my BP and it went too high, I stopped taking that, too and I hover around 116/68 which isn't bad... But, I'm starting to swell, and my hair is falling out again, and I have like no appetite again... So it scares me...

As far as antibiotics, I never understood how people with Lupus were allowed to take them... Don't they raise your immune system? And isn't that what we are trying to prevent???

MARYCAIN
11-19-2006, 02:30 PM
Hi, Solesinger - I have an ongoing problem with low blood pressure, and the bp medicines prescribed for kidneys and Reynauds dropped it like a stone. so they had to discontinue them. If fluid retention is a problem your doctor might be able to prescribe a mild diuretic to help without lowering your bp too dramatically. Dehydration can also cause your bp to drop, so if you're restricting fluids because of swelling, it might make the low bp worse.

The doctor who manages my bp told me to use a little salt with each meal, and not try to restrict it completely, as I had been doing because of the fluid retention. Now I use a natural sea salt, which doesn't cause a lot of fluid retention. I also have to be careful about my electrolyte levels because my potassium goes up and down erratically, and it definitely affects my bp.

If you get dizzy a lot while standing, ask your doctor whether compression stocking might help. These keep the blood from pooling in your legs and also reduce swelling in the legs. Raising the head of your bed about 4 inches can help reduce the dizziness when you first get up put of bed.

I also like to cook with a lot of rosemary because it helps raise your blood pressure naturally without raising it too high. Another thing that will also raise your bp naturally is licorice - the real licorice candy, not the artificially flavored kind. I keep some on hand and eat a piece when I know the bp is low. Obviously you should stay away from it if your bp is high, but it's a good emergency remedy, although probably not a substitute for meds.

Hope this helps!

Quarterhorsegal
11-19-2006, 08:02 PM
Keep in mind when taking any medication that affects your blood pressure, you should be cautious about rapid changes in position because that can cause your blood pressure to drop rapidly too. By changes in position I mean laying down to sitting up, or sitting to standing. The term for this is postural hypotention, and it can cause you to become very dizzy or pass out.
Medications are generally cleared from the body by either the liver, or the kidneys, or both. Therefore, any decrease in kidney function can greatly affect which medications can be taken, how much can be taken, and how often they can be taken. Antibiotics are no exception. Vancomycin and the aminogycoside antibiotics (gentamycin, kanamycin, tobramycin, neomycin) need close monitoring of the kidney function when they are given. Other types of antibiotics, like quinolones (cipro,levaquin,ect) should be given less frequently than usually given. I guess I should just make this my personal salutation since I say it all the time anyway.

Make sure you tell your doctor AND/or pharmacist.
Laura

SoleSinger
11-19-2006, 09:27 PM
well the thing is, I am so sensitive to any of that stuff it's crazy! they had me on such a small dose of lasix and lisinopril (taking away the other bp med and diuretic completely) and I was drinking gatorade like water because of the potassium and salt, and my bp STILL dropped. And then if I eat enough salt to make it go up, it rises and rises and rises until I take a diuretic to bring it back down (by dr.s orders)

I can't afford $600 for compression stockings again. And honestly, it scares me because the compression stockings made me so much worse before i went into the hospital and got my dx... I know it's dumb but once bitten twice shy...

I'm also losing potassium... and we don't know why... I am taking 80 MEQs a day!!!!! So that could be another reason why my BP is so low... and then they did an EKG and said that I suddenly had right side atrial enlargement and possibly pulmonary hypertension... so there's another reason... and I came back a low positive for a blood clot (which he said could be falsely positive so he's doing more tests... But, man oh man I just want to be normal again!

And it isn't postural hypotension for me anyway... Personally, I get it sitting, lying down, and standing without changing position. The last time I passede out I had been sitting for 5-10 minutes before I even started feeling weird!

I'm just screwed up...

MARYCAIN
11-19-2006, 10:22 PM
Yes, potassium can certainly affect blood pressure, not to mention your heart and all the other organs. Have you been seen by an endocrinologist? Because when my potassium levels were going up and down like a yo-yo - that's who my rheumie and nephrologist finally called in, and he finally managed to get it reasonably under control -ironically, my problem was not a potassium deficiency, but a magnesium deficiency - apparently your body needs magnesium to keep you from losing too much potassium, and because of a problem with my small intestine, I wasn't absorbing enough through food. Plus I was taking lasix which also causes loss of magnesium, And since many of the symptoms of magnesium deficiency are also common with lupus - fatigue, weakness, nausea, numbness, tingling, muscle pain, etc. - I didn't notice anything different. I'm sure your doctors have probably checked your magnesium levels in trying to figure out the low potassium problem, but it might not hurt to ask. :)

Quarterhorsegal
11-20-2006, 06:48 AM
Solesinger,
What a frustrateing problem! I did not mean to insinuate that all of your troubles are due to postural hypotension. I mentioned it because it seems that so many of us are taking one type of drug or another that affect blood pressure, and so many seem to have dizziness as a symptom. It can be a challenge to differentiate between disease symptoms and drug side effects, especially when the disease can cause sooo many different symptoms. I hope you get some answers and relief soon.
Laura

SoleSinger
11-22-2006, 05:55 PM
Oh NO! I didn't take it that way at all! Sorry if I sounded curt or offended or anything. I just meant to say that for me, that's been ruled out... Sorry...

Missy
11-29-2006, 09:25 PM
What a crummy situation, Solesinger. I hope you can find some combination of treatment that works for you. I feel a bit lucky because even at my worst kidney problems I didn't have water retention problems.

So, I think the Sulfa drug did cause a flare - saw the Nephrologist today and I think I'm going to have to do a course of Prednisone. I'm bummed because I've really been working on getting off the meds and had been doing so well.

And I'm disappointed that my internist, whom I really like and listens to me, missed the boat on this one.........

littlered
12-12-2006, 03:06 PM
What IS creatine anyway? My doc was alarmed at my creatine levels during my last urine test (also had protein and blood in my urine.)
I think I may ask him for a referral to a nephrologist.
But somebody explain how the kidney works, and what these test results mean????

ganesha
12-12-2006, 04:14 PM
littlered,
I think they were likely referring to your creatinine level. Creatinine is a measure of kidney function with most peoples ideal number being around .6 or so I think. I run a little higher due to paralysis and low muscle mass. I have lupus nephritis, but fortunately my kidney function is still very good. I think your going to a nephrologist is a very good idea with the protein and blood in urine, and the creatinine being high (I am assuming yours was a bit high recently). Good luck.
Brent