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SonyaLA
07-08-2007, 08:50 PM
Hi Everyone,

It's been a while since I posted, although I try to keep up with everyone by reading other posts. I see a question about kidney failure on this board but I have a couple other questions maybe someone can answer.

My rheumy is on vacation, but right before she left, we went over my recent labs. My creatinine level is okay, but I have way too much protein and white blood cells in my urine. She ordered a culture for bacteria, and when prodded told me to hope for an infection, otherwise the kidneys were in a lupus flare. Well the labs came back, and while there is "some flora", it wasn't enough to think I had an infection. At least that is what her nurse says since my doc is on vacation.

The pain has kicked in, and I've had some tremendously painful nights. My legs were so restless, I kept my hubby up all night. Since my liver started failing in Jan., I'm only able to take Tramadol and Aleve for the pain, neither of which help tremendously. Another weird thing is that I can feel flutters in my back. Almost like kidney spasms. I've had bladder spasms before, and it feels very similiar, except it's about a third of the way up, only on my right side. To make matters worse, I'm having a doozy of a period. The fatigue is awful, as well as the brain fog. I'm struggling with everyday words, stumbling with my speech.

So with no one to tell me otherwise, I've upped the preds myself to 20mg a day. I could call the back-up rheumy, but usually he just looks at my charts and instructs me to up the preds to 25 until I see her again. My doc is usually more sparse with the preds. (which I appreciate, but right now I think it's the best thing to do). FYI, the other meds I take are plaquenil, Soma, Tramadol, Prilosec, Claritin-D 24, Loestrin (low dose birth control), multi-vitamin, and extra calcium and Vitamin D.

My questions:

If my creatinine is okay, do I still have to worry about the protein?
Do you think the back flutters are connected?
What are my other options if my kidneys are having issue, and the preds do not help?
Is the horrible pain in my legs connected to the kidney issues?

Any help would be appreciated..

Thanks, Sonya

Chickadee722
07-10-2007, 12:47 AM
I've just started having trouble with my kidneys also. Apparently I have an incredible amount of protein in my urine and I had to do a 24 hr urine collection to check the protein and creatnine. Still waiting for those results. I have those same back spasms right by my kidneys. I've found that it only really hurts at night. It will start with more of a crampy/achey feeling, but I'll wake up in the middle of the night with really intense SHARP pains right in that area.

My Rheumy upped me to 20mg of Prednisone TWICE a day to get the inflammation down for two weeks. I am wondering the same thing. What is the next step if the prednisone doesn't lower the protein??

Hope you get some answers when your normal Dr. gets back from vacation. I have to wait until next week when I see mine. :(

Saysusie
07-10-2007, 11:21 AM
Serum creatinine concentration is used clinically as a convenient index of how the kidney is functioning. It is important to remember that even a minimal elevation in creatinine can mean that there is a significantly decreased rate of glomerular filtration (Kidney functioning). In fact, up to 40% of patients with normal serum creatinine level may have some reduction in glomerular filtration rate. Doctors should still calculate the glomerular filtration rate in order to assess your kidney function.

There are ten common symptoms of Kidney disease:

Symptom 1: Changes in Urination
Kidneys make urine, so when the kidneys are failing, the urine may change. How?
You may have to get up at night to urinate.
Urine may be foamy or bubbly. You may urinate more often, or in greater amounts than usual, with pale urine.
You may urinate less often, or in smaller amounts than usual with dark colored urine.
Your urine may contain blood.
You may feel pressure or have difficulty urinating.

Symptom 2: Swelling:
Failing kidneys don't remove extra fluid, which builds up in your body causing swelling in the legs, ankles, feet, face, and/or hands.

Symptom 3: Fatigue:
Healthy kidneys make a hormone called erythropoietin (a-rith'-ro-po'-uh-tin) that tells your body to make oxygen-carrying red blood cells. As the kidneys fail, they make less erythropoietin. With fewer red blood cells to carry oxygen, your muscles and brain become tired very quickly. This condition is called anemia, and it can be treated.

Symptom 4: Skin Rash/Itching:
Kidneys remove wastes from the bloodstream. When the kidneys fail, the buildup of wastes in your blood can cause severe itching.

Symptom 5: Metallic Taste in Mouth/Ammonia Breath:
A buildup of wastes in the blood (called uremia) can make food taste different and cause bad breath. You may also notice that you stop liking to eat meat, or that you are losing weight because you just don't feel like eating.

Symptom 6: Nausea and Vomiting:
A severe buildup of wastes in the blood (uremia) can also cause nausea and vomiting. Loss of appetite can lead to weight loss.

Symptom 7: Shortness of Breath:
Trouble catching your breath can be related to the kidneys in two ways. First, extra fluid in the body can build up in the lungs. And second, anemia (a shortage of oxygen-carrying red blood cells) can leave your body oxygen-starved and short of breath.

Symptom 8: Feeling Cold:
Anemia can make you feel cold all the time, even in a warm room.

Symptom 9: Dizziness and Trouble Concentrating:
Anemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems, trouble with concentration, and dizziness.

Symptom 10: Leg/Flank Pain:
Some people with kidney problems may have pain in the back or side related to the affected kidney. Polycystic kidney disease, which causes large, fluid-filled cysts on the kidneys and sometimes the liver, can cause pain.

I hope that this has answered some of your question. Let me know if you need more information.

Peace and Blessings
Saysusie

racinie
07-10-2007, 05:56 PM
i'm going through the almost the exact same thing right now. I feel good, but that's because i'm on 30mg of prednisone. I'm pretty anemic but i don't feel tired. I've had a lot of protien in my urine for a while and i just did a 24 hour test. (BAH- I HATED IT) also still waiting for results. As to your question about what to do if the increase in prednisone doesn't work, my rheumatologist and nephrologist put me on 2000mg cellcept. I have yet to see if it's working but i really hope so so that i can cut down on the 'roids. I HATE PREDNISONE. mostly because i don't want to gain weight or get a puffy face. so far i haven't but i think it's coming...

SonyaLA
07-10-2007, 08:29 PM
Thanks SaySusie, that information helps. Hopefully, I will be able to talk with my doc tomorrow. The preds helped a little bit, but of course I'm having trouble sleeping. Last night I might have gotten 3 hours. I tried going into work, making it about 9:30. By lunch I was drooping. I came home and collapsed. I managed to get a call out to my Dad to pick up my kids, and a call to my hubby and then slept 3 hours. My back is hurting again, although the legs have eased.

Racinie and Chickadee.. Thanks for your comments... It's weird how so alone we can feel in these symptoms, and then you see someone else with the same thing! I'm not crazy!

I'm craving food because of the preds, and my face is already round enough from all the other times... I'll check out info on cellcept.

Saysusie
07-11-2007, 12:50 PM
Please let us know what your doctor says. I am sorry that you are feeling so much fatigue. I hope that you are able to find some form of relief soon.

Saysusie

SonyaLA
07-12-2007, 06:44 PM
I talked with my doc today, and the latest urine test looked much better. My doc wants to just 'monitor" the situation for now. And of course, ease back off the preds.

My fatigue has eased a bit, I was actually able to work almost a normal day today. However, the leg pain has intensified. By the time I was cooking dinner (first time in weeks, and it was just tacos.. but hey..) I couldn't wait to just plop down in a warm tub with two tramadol, and a soma thrown in for measure...

I had lunch with my boss, and shared with him that this was one of those weeks that made me seriously consider retiring from work. He gulped and said I might as well shoot him instead. Also, one of th directors who is aware of my illness had a conversation with him, and is very concerned for me, and wants to to do everything possible to help me through. She has always been very supportive of my work, but it's very nice to hear it as it concerns my illness. I am truly blessed with my work situation. I have to remember that when I get the looks from my peers as I leave right after lunch... "she doesn't look sick to me".

The brain fog is almost gone.... what a relief. I guess I just had a little mini-flare. I'll take it.

Saysusie
07-13-2007, 11:42 AM
I am glad that your doctor is being effective! That is SOOOOOO important. Also, you are doing the right thing by learning as much as you can about this illness and how it affects YOU!
Yes, you are also blessed not to have an extremely stressful situation at work. I hope that these things help you in acheiving a form of management for your symptoms so that you can continue to have "almost normal" work days (believe it or not, that is a victory in and of itself) :lol:
Keep coming here for anything that you need! There will always be someone here to help you!
I am glad that you sound so much better today!

Peace and Blessings
Saysusie

racinie
07-15-2007, 09:35 AM
i'm so happy for you that your kidneys are doing better!!!!!!!!!!!!!!!!!!!!!!!!
I don't think I am quite as lucky, I'm going to get a kidney biopsy here in the next couple weeks because my kidneys just arn't getting better, while the rest of me is.

IloveHistory
07-15-2007, 11:34 AM
Hi!

SonyaLA: I'm SO glad to hear that your kidneys are doing better and that your work is so understanding of your condition! :) I will keep you in my thoughts and prayers...

Racinie: Good luck for your kidney biopsy! I'm SO sorry to hear that things aren't going well with your kidneys, but I am glad that at least the rest of you is getting better! You too, will be in my thoughts and prayers...

Keep well and God bless! :)

SonyaLA
07-17-2007, 02:37 PM
Thanks for all of your support! This forum is so much help to me.

Racinie - I will be praying for you. Let us know how the biopsy goes.

Sonya

racinie
07-17-2007, 10:37 PM
My rheumatologist seemed really worried that i might have class 4 or 5 nephritis, so he had me see my nephrologist asap. I went in, thinking we were going to finalize plans for a biopsy and probably end up going on cytoxan/ high dose prednisone. Instead, he looked over my tests results and decided that he thought the cellcept WAS working. he seemed very optimistic, and gave me 4 out of 5 that it would get me out of kidney trouble. Although my kidneys were still spilling a lot of protein, i guess it wasn't as bad? Anyway, I don't have plans for a biopsy anymore, at least not in the near future. I've never been so relieved/greatful for my health as I am now. I still don't know if my kidneys are alright for sure, but at least they're working ok. Thanks for the prayers, i know it's made a difference.

Saysusie
07-18-2007, 10:29 AM
Hi Racine :lol:
What good news!! I am also happy that you will not need a biopsy now and that your kidney function seems to be improving. I LOVE to hear good news!!
I will breath a sigh of relief with you :lol: :D

Congratualtions
Saysusie

msdawnie44
07-30-2007, 05:07 PM
Saysusie.....i have six of the symptoms you mentioned.......protein in my urine as well.....i am in so much pain it is unreal.....but since my ana went way down.......I can not seem to find a doctor who will listen......can you give me any advise....or any ideas or written proof i can give to my doctor...i also have a cyst on my kidney the size of my thumb (probably not related) I am desparate and miserable can you please help me???
God Bless......Dawn

Saysusie
07-30-2007, 09:01 PM
Dawn;
Is your doctor saying that you do not have Lupus because your ANA titer went down? And, therefore, is he saying that since you do not have Lupus, that you do not have problems with your kidney function? Otherwise, I cannot see how your low ANA alone would have anything to do with determining your kidney function. Now, in the case of nephrotic syndrome, there are several tests used to diagnose the condition, not just the ANA. Those tests are: Urinalysis, serum albumin, total protein, cholesterol, urine total protein, antinuclear antibody (ANA) test, hepatitis B test, hepatitis C test, complement levels
Performing tests on samples of your blood and urine are the first line of defense in detecting kidney problems and minimizing damage. Tests of these types can show how well the kidneys are removing excess fluids and waste. When a structural problem is suspected, a variety of imaging tests can be used to evaluate the kidney. A sample of kidney tissue, a biopsy, is also helpful in diagnosing the specific cause of the problem.
There are several tests commonly used to help a doctor to recognize if you have kidney or urinary disease. As I mentioned in my previous post, a blood sample can be analyzed for creatinine (and estimated glomerular filtration rate (EGFR)) and blood urea nitrogen (BUN). The level of these waste products in the blood increases as your kidney filtration declines. Abnormal results are usually the first sign that kidney disease is present. A urine sample is typically also examined and analyzed (urinalysis) as part of routine screening. This set of tests looks for indicators of kidney and urinary disease such as red blood cells, white blood cells (WBCs or leukocytes), and protein in the urine.
If you have six of the signs listed above, you should insist that your doctor order the screening tests. Perhaps print these posts and take them with you to your doctor to advise him/her that you have six of the signs of Kidney involvement as well as protein in your urine. If he refuses to run the tests, ask for another doctor who will take you seriously!
If, after the screening tests, you have been diagnosed with a kidney disease, your doctor should thenl order laboratory tests to help monitor your kidney function. Blood levels of BUN and creatinine are measured from time to time to see if the kidney disease is getting worse. The amount of calcium and phosphate in the blood and the balance of serum and urine electrolytes can also be measured, as these are often affected by kidney disease. Hemoglobin, measured as part of a complete blood count (CBC), may be measured (the kidneys make a hormone, erythropoietin, that controls red blood cell production). Urine total protein can be used to test the effects of treatment in diabetes and nephrotic syndrome. Parathyroid hormone, which controls calcium levels, is often increased in kidney disease and is often checked to see if enough calcium and vitamin D are being taken to prevent bone damage.
Go fight for your right to be heard, listened to, taken seriously AND TREATED!
Please let us know how it goes
Peace and Blessings
Saysusie