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tgal
12-28-2011, 07:42 PM
Here is a question for all of you with Kidney involvement.

I know the medical answer is that you don't know when your lupus has begun to attack the kidneys. They say there are no symptoms and only the urine/blood tests let you know. I now want to ask those that have if that is their experience.

I have basically been in a flare for several months. As most know I have CNS involvement and it has been tough going for awhile. I have begun to swell a lot. My hands and my feet mostly but I have assumed that it has been caused by my meds. Yesterday I began to have some pain in my kidney area on the left hand side. It is getting worse and I am assuming it is just a kidney infection and am doing all the home remedy stuff for it. I have a doctors appointment on the 4th and will talk to him about it then but I just thought that I would check with ya'll to make sure that the "experts" were all correct

Linda From Australia
12-28-2011, 08:26 PM
You really don't need any more sickness. If you think you have a kidney infection it is probably better to see a doctor to get some antibiotics as soon as possible. But I understand it is difficult for you to get to the doctor and the cost involved. I am interested in the 'home remedy" you are using and how it works. My mum always told me to drink plenty of water whenever I complained about being sick. Take care my friend.

tgal
12-28-2011, 08:35 PM
You really don't need any more sickness. If you think you have a kidney infection it is probably better to see a doctor to get some antibiotics as soon as possible. But I understand it is difficult for you to get to the doctor and the cost involved. I am interested in the 'home remedy" you are using and how it works. My mum always told me to drink plenty of water whenever I complained about being sick. Take care my friend.

Just water and cranberry juice! You have/had kidney involvement didn't you? Did you have any symptoms before the test results?

Linda From Australia
12-28-2011, 08:46 PM
I had some sort of kidney involvement, but no infection so no pain, only swelling.

SleepyInSeattle
12-28-2011, 09:34 PM
tgal, I don't know about kidney involvement with lupus (thank goodness!!!) but I have had a chronic problem with UTI's and bladder infections - probably had 100 of them over the last 25 years. I remember reading that most cranberry juices have too much sugar in them to be useful for infections...the sugar actually FEEDS the bacteria. So if you go that route, you might want to at least get the sugar-free juice. Also, most research suggests you need 16 glasses a day to be effective...which is a heck of a lot of cranberry juice! So a supplement might work better....

I have had WONDERFUL luck with an OTC product called "Cystex" - not a cranberry product, but it works better for me than anything else I have tried (and believe me...I have tried them all!!!!). Of course, everybody is different - that's just my experience. And I don't know if it helps with Lupus kidney issues - just that it helps clean out the urinary tract generally.

If it is an infection, remember that Bactrim (which is the drug of choice for UTI's) is really dangerous for folks with Lupus.

I am so sorry that you are having this trouble. I have recently had a sort of "mini-flare" - seems to be getting better now (I hope), but for the first time ever, I had swelling and pain in my lower legs for several days. I also was thinking it was maybe the first signs of kidney involvement, but I had a Rheum check and he said not to panic - I have more blood/urine work due next month and just wait to see what that says. My blood work etc was fine about 2 months ago. So I guess we'll see.

It's so hard not to worry, isn't it?!

Anyway - I hope some of that helps and that you are okay.

Mommyof1
12-28-2011, 09:40 PM
I have been curious too about kidney involvement as I've had labs show protein and bacteria in my urine before and this last one I had protein, wbc's, casts and bacteria. My complement was also notably low. I'm like the opposite of everything that is supposed to be. With my kidney infections I've had(3 so far)I never had any burning with urination just back pain up into my kidneys and sharp pains in the flank area along with tiny spots of blood. I do not get the "normal" symptoms with sicknesses so it's hard for me to even tell what is infection and what isn't in the first place. Anyhow, I've always had issues with my eyes being puffy upon waking and having the indentation from socks in my feet or leg pain after walking all day. I'm also getting bruising now on my legs when I flare. I've showed my dr but they don't see concerned although it happens when I'm flaring and then goes away like everything else. I was just put back on 7.5mgs of pred due to have adrenal insufficiency and low cortisol at 1mg and then those labs came up after being on the increased pred at 2 1/2 weeks. She was supposed to switch me down to hydrocortisone and try and taper me from there but since I had the flag in the labs dec 12th I had to get a retest set I'm waiting to hear back about. ...Sorry to rant and ramble but I just wanted to share my concerns and I'm curious about everyone's experience as well! Thanks so much and hope you had wonderful holidays! -Lupie Brittanee

P.S. I've also had some weird symptoms with my head lately...Like earlier tonight in church it felt as if the right side of my head was heavier than the right and was pulling or pushing me down or something and I was really spacey and stuff...on christmas eve I had come in from outside and started feeling dizzy and spacey and nauseous so I had to lay down. When I did all the aching, burning etc started with the lupus crap I usually get. The burning has happened a lot more since then and is present tonight as well after the weird head thing at church. Any ideas??...figured I'd mention this and get anyone's take on possible CNS involvement??

magistramarla
12-28-2011, 09:53 PM
Mari,
The swelling is what worries me. Are you having any chills/fever? A bad kidney infection can be dangerous, so be careful.
I've never had a doc say that I have kidney involvement with the AI issues, but I think that I've had some.
I had a horrible infection back in college. By the time I let Jeff take me to the ER, I had a fever of 106. He was sure that he was going to be explaining the dead girl in his dorm room to the authorities that night - LOL. That was when I found out that I have two ureters on one side. When one swells up, it blocks the other one and causes a bad infection. I even miscarried my twins due to having a bad UTI very early in the pregnancy.
I had lots of problems with frequent UTIs until I started taking a cranberry supplement EVERY DAY, without fail.

My AI issues first got really noticeable when I was stressed out at my mother-in-law's death. I was literally peeing blood for several days. I really think that this was an indication of some kidney involvement with the AI issues, but the doc that I had at the time ignored it.

So, please don't wait around too long if you keep having those symptoms. At least, go see an urgent care doc, or something.
I'm worried about you!
Gentle Hugs,
Marla

tgal
12-28-2011, 09:55 PM
What I would give to be on 7.5 mg of prednisone! I am currently on 60 (yes, 60) and MTX. I don't know if you have a neuro or not but, if not, I would suggest seeing one. One of the first ones that I saw noticed that my head tilted to the right. She would fix it and it would fall back. be careful of the "spacey" times. Even when they don't go as far as seizures like I have the really serious "fog" can cause terrible things (ask Steve and his toes). We make fun of our brain fog but there hits a crucial point where it is more than that and a neuro needs to be seen. There are tons of symptoms of CNS involvement but the key thing to remember is that if it involves your heart, brain, lungs or any major organ it needs to be looked into.

chinadoll
12-29-2011, 04:49 PM
Tgal,

I hope you are able to get into the doc prior to the 4th...that seems like a long way out if you have a kidney infection! Are you running any fever?

To answer your question: it is true (at least for me) that you can have kidney involvement and not know it. I was nephrotic and had no idea until it showed up in my urinalysis. When your kidneys are inflamed, they "leak" stuff like wbc's, rbc's, protein and other enzymes into your urine...cells that shouldn't be there at all, and you won't know anything about it until your blood pressure goes up or you have a urinalysis and it comes back abnormal. At least that is the way it was for me.

Wow...you are on a high dosage of prednisone, aren't you? When I was taking that much, I swelled up a lot...my hands, my face, my feet and ankles...ugh! One of those nasty side effects that prednisone is so famous for. I'm sure I'm not telling you anything new, but limiting your salt intake will help with the swelling and the weight gain. I know that itsn't easy, because that is just the type of foods you crave the most!

I do hope you feel better soon and can get help from your doctor.

(((hugs)))
Kathie Lea

tgal
12-29-2011, 05:45 PM
I think I wasn't clear with my question but thanks so much for the answers!!! Let me try to be more clear in my asking of this..

I KNOW that most people never know that they have kidney involvement until the leakage is found in the test. It is a "silent killer" as it were. What I am wondering is if anyone has had problems with their kidneys and known it/felt it in their body before the test.

Sorry I was unclear! Ya'll all rock!


@Chinadoll.. honey you are speaking to the choir about the weight gain. I have been on 40-60 mg of prednisone for over a year and was on 10- 20 the two years before that)! Sadly I gave up on trying to keep the weight off (as much as I would like to) what I really want to do is stop acting like Dr. Jekyl and Mr. Hyde!

Keep up the suggestions!

debbie-b
12-30-2011, 04:54 AM
Tgal,

I hope you are able to get into the doc prior to the 4th...that seems like a long way out if you have a kidney infection! Are you running any fever?

To answer your question: it is true (at least for me) that you can have kidney involvement and not know it. I was nephrotic and had no idea until it showed up in my urinalysis. When your kidneys are inflamed, they "leak" stuff like wbc's, rbc's, protein and other enzymes into your urine...cells that shouldn't be there at all, and you won't know anything about it until your blood pressure goes up or you have a urinalysis and it comes back abnormal. At least that is the way it was for me.

Wow...you are on a high dosage of prednisone, aren't you? When I was taking that much, I swelled up a lot...my hands, my face, my feet and ankles...ugh! One of those nasty side effects that prednisone is so famous for. I'm sure I'm not telling you anything new, but limiting your salt intake will help with the swelling and the weight gain. I know that itsn't easy, because that is just the type of foods you crave the most!

I do hope you feel better soon and can get help from your doctor.

(((hugs)))
Kathie Lea

Wow, that is very interesting to me, that high blood pressure is the first sign of kidney issues.
About three months ago, at my primary docs office, I had high BP for the first time in my life. It was 155/98, pretty high, considering mine was 110/75, all of my life. Now it is always between 139/92 and 155/95.
I am going to call my rheumy today, to see what he thinks.
I also have problems with high liver enzymes, I wonder if high BP could signal possible liver failure, just like kidney failure.

Debbie

RaoulDuke
03-10-2012, 05:46 AM
I KNOW that most people never know that they have kidney involvement until the leakage is found in the test. It is a "silent killer" as it were. What I am wondering is if anyone has had problems with their kidneys and known it/felt it in their body before the test.


Most definitely. I was 18 when I first got sick and I'd never been sick before so I was pretty scared about what was going on with my body at the time and didn't seek medical help for way too long. I had symptoms such as a dull ache in my back in the region of the kidneys that would mostly appear when lying down. It was enough that it was hard to get comfortable.

From there, I was excreting so much protein in my urine that I was retaining a massive amount of fluid. This protein also makes urine frothy, kind of like a head on a beer. Just prior to my first hospitalisation this was about 15-20 kgs worth of fluid. My lower legs were bloated and the skin was like putty - you could push a big indentation in and it would just stay there. This fluid ended up in my lungs after being bed bound for a weekend and collapsed a lung.

I also had visible blood in my urine at one point.

Mind you, I had pretty serious kidney involvement.

lisalewis1973
03-11-2012, 11:17 AM
so far i dont have kidney involvement yet.. but i certainly think it's possible to have/feel signs of kidney involvement before it pops up on tests.. i hope you are feeling better soon! sorry i can't be of more help..

Shine
03-11-2012, 07:23 PM
My brother had kidney failure (not lupus related we dont think...) and he was constantly told by doctors "Kidney failure doesn't cause pain." But he had aching pains in his back for so long...the way he described them made me think of period pains.

They also told him a kidney biopsy wouldn't hurt, to which he replied "have you had it done then? hmm? no...didn't think so, so I'll tell you whether it hurts or not..." And apparently it did!