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zfelix
02-04-2004, 10:33 AM
Hi my fello lupus friends,

i'm new to this forum, but i've had lupus for about 8 years now. SEems like i always have something that doctors go " hmmm" to. lol well recently i had really severe kidney pain, which i just got yesterday again, i went to the ER as well thinking it was some type of kidney stone, they thought so also, and they did a ultra sound of my kidney and found nothing, but a trail of blood through the tube of the kidney but no sign of any stone, now they don't know what to think, they said they have heard of cases of lupus patients getting kidney pain (spasms) and then blood fellowing the pain but they don't know much about it! hmmm that's nice! Just wondering if any of you get this and what you have been told. Right after the pain yesterday i had blood in my urine again. Nice to meet all of you too... :lol:

Saysusie
02-05-2004, 11:40 PM
Hi zfelix;
The most common kidney involvement with Lupus is protein leakage in the urine and generally does not cause discomfort or pain. When the kidney is inflamed, your blood pressure may rise and when the kidney is more severly damaged, the filtering process may become impaired causing toxic elements to become present in the blood. This can lead to wheight loss, nausea and general malaise.
I could find no information about pain, bleeding and spasms in the kidney when related to lupus only!
Has your doctor tested you for lupus nephritis? This is a condition complicated by Lupus in which the immune system produces antibodies against your body's components. Complexes of these antibodies and complements accumulate in the kidneys and results in an inflammatory response. This condition can cause a nephrotic syndrome (excessive protein excretion) and my progress to renal failure. There is also an accumulation of nitrogenous waste products in the blood stream which can lead to urinary abnormalities, including protein and blood in the urine.
Ask your doctor about this symptom and the tests. Let us know what the results are.
Best of Luck
Saysusie

zfelix
02-06-2004, 09:57 AM
hi,
Thank you for your response, i will see him in a week, so i will mention it. HOpefully it's nothing too serious...:(. i'll keep you updated thanks again.

-Mandy :)

mmichelle
03-22-2004, 04:24 PM
Just so you know... I have the kidney pain as well, and periodically severe pain with blood in the urine.

They can not figure mine out either. Let me know if your docs come up with anything... and I'll let you know if mine do.

zfelix
03-23-2004, 12:52 PM
Ok, thanks a lot. i'm glad i'm not alone. let me know if you find out anything.

:)

Missy
03-30-2004, 11:36 AM
FYI - I also have kidney pain, but I have Lupus Nephritis. The weird things is, just like Saysusie said, I did not have kidney pain when I was going downhill with kidney function before I was diagnosed with lupus. But, my kidney pain seems to be getting worse and worse, even thought my kidney function has gotten better. Maybe the meds? That seems weird to me, so I'll ask the Nephrologist on Monday. But my original Rheumy, before I moved and changed Rheumy's, said it's normal for people with Nephritis to not have any kidney pain. Maybe it's one of those SLE things, like everything else, where we all have different responses?

Anyway, good luck!

Missy

muriate
03-30-2004, 08:24 PM
I am havin alot of the same symptoms. Recently got out of the hopital after 4 day of iv fluids. I had a infection or colitis bout. Since then I have on and off kidney pain. I explain like someone kicking you in the back. Feels like a spasm. So far my kidney functions are OK. I do have bouts of blood in my urine after the pain. I will let you know if anything is found out. I have no stone and no kidney infection.
Take care

Missy
04-04-2004, 06:52 PM
I can't relate to the feeling kicked in the back, mine's more like dull pain that lasts for a couple of hours at a time. I'm going to the kidney specialist tomorrow, so I'll ask about it, but does anybody else have this kind of pain?

Missy

mmichelle
04-05-2004, 10:51 AM
Yes I do have that exact pain. It is exactly how I described it to my doctor.

Keep me updated... I'll be seeing a nephrologist soon.... I'll keep you posted as well!

Michelle

Missy
04-08-2004, 06:01 PM
Ok mmichelle, I saw the nephrologist and have Type 4 Nephritis, the worst kind, but I had kind of figured that out already. He spent 2 hours with me and consulted with his 3 other peers to give me the final diagnosis. Anyhow, I'm staying on my Cellcept/Prednisone tx, probably for 8 more months - a total of a year, as this tx has an 80% remission rate.

Anyhow, the only thing I don't agree with him about is the kidney pain! He says it's not lupus- it's musculoskeletal, and wants to refer to it a as "pain in the flanks", not kidney pain. But I don't have other swelling/joint pain, and I SWEAR it is dull, kidney pain, and usually occurs in the morning if I didn't get up to pee in the middle of the night! He says, "Most people with nephritis don't have kidney pain", but doesn't "most"mean that there still are some? I agreed with him on everything but this.

Any news on your nephritis?

Missy

mmichelle
04-09-2004, 05:38 AM
I'm so sorry to hear that you have 4th stage Nephritis. There is a new medication that has a high success rate with out the side effects of steriods. It is still considered experimental in the US but I think it is something worth you looking into.

As for the pain. Doctors are doctors. Maybe Nephritis of other kinds aren't painful but I've been reading up on Lupus nephritis and one of the symptoms is sometimes having "flank like pain" due to inflammation. Since Lupus is an inflammatory disease it would only make sense that you would have some inflammation in that area. Inflammation in the nephron of the kidney.

Also, the pain is more notable in certain stages of the nephritis. Some one with stage one may have no symptoms at all.

I will put a packet of information together for you to give to your doctor.

And if it is okay with the Site Administrator I will post the URL on the new experimental treatment for lupus nephritis. This medication has also been known to help keep lupus in remission.

Neprhitis is scary... at least to me. I went to the doctor again, they refered me to a nephrologist/urologist for the biopsy. All the other tests show I have it so I guess this is where we find out what stage I am in. I will keep you updated.

When I read your posts, it seems to me that you are a strong willed person and I know that you will beat this.

When you feel like you need to stop and rest... DO IT. When you feel like you want or need to cry... do it. If you need to talk or vent do it. Don't worry about what anyone will think about it. Worry about you.

Please keep in touch and keep me posted on how you are doing. I will do the same.

Michelle :)

heavenorvegas
04-11-2004, 03:27 AM
I get "flank pain"---when I press on back it can hurt--it feels like kidney pain but I think(hope) its muskuloskeletal....last time I checked have had no kidney involvement

Missy
04-21-2004, 07:22 PM
Thanks, mmichelle, so much for the info. My Naturopath did think the kidney pain is due to Nephritis, also, and we're going to try some acupuncture to see if that helps with the pain. I've never done it, so I'm excited!

I hope your kidney biopsy goes ok. I think it's good news you are having one, because I basically don't need one because my kidneys are so bad they don't need one to see that I have Type 4. Yet, the nephrologist says I'm a long way from dialysis and I think slowly, but surely, things will turn around. I'm feeling pretty good. I will look forward to hearing what the Nephrologist says.

Good luck!

Missy

tdeyne
09-12-2004, 04:21 PM
i also have kidney pain! my rheumy told me recently that i have a small amount of protein in my urine. i am in the process of scheduling myself to see a nephrologist. i am soooo scared guys! :cry: i have never had any kidney problems to date and now my worst nightmare is happening. my rheumy says not to worry at this point as the amount of protein is not that high. i am at 162 and i think the max was 150. but when it comes to this disease i tend to overworry at times. he prescribed me an ace inhibitor which i haven't gotten filled as i am waiting to see the nephrologist. does anyone know if this ace inhibitor thing is for life? is this something i will always have to take? thanks so much for all the info. you guys are awesome! i'm so glad i joined this group!

Saysusie
09-18-2004, 10:05 AM
Hi Tdeyne;
Here is what I have been able to find out about ACE inhibitors and lupus nephritis. lupus nephritis is a nephrotic condition marked by high levels of protein in the urine; low levels of protein in the blood; swelling, especially around the eyes, feet, and hands; and high cholesterol. Nephrotic syndrome results from damage to the kidneys' glomeruli(the singular form is glomerulus).Glomeruli are tiny blood vessels that filter waste and excess water from the blood and send them to the bladder as urine.
Many diseases affect kidney function by attacking the glomeruli, the tiny units within the kidney where blood is cleaned.
Although glomerulonephritis and glomerulosclerosis have different causes, they can both lead to end-stage renal disease (ESRD) which can interfere with the clearance of waste products by the kidney, so they begin to build up in the blood. Furthermore, loss of blood proteins like albumin in the urine can result in a fall in their level in the bloodstream. When albumin leaks into the urine, the blood loses its capacity to absorb extra fluid from the body. Fluid can accumulate outside the circulatory system in the face, hands, feet, or ankles and cause swelling.One or more of these symptoms can be the first sign of kidney disease.
Systemic lupus erythematosus (SLE)affects many parts of the body: primarily the skin and joints, but also the kidneys. Lupus nephritis is the name given to the kidney disease caused by SLE, and it occurs when autoantibodies form or are deposited in the glomeruli, causing inflammation. Ultimately, the inflammation may create scars that keep the kidneys from functioning properly.Renal failure is any acute or chronic loss of kidney function and is the term used when some kidney function remains. ESRD is total, or nearly total, and permanent kidney failure. Depending on the form of glomerular disease, renal function may be lost in a matter of days or weeks or may deteriorate slowly and gradually over the course of decade.
ACE stands for Angiotensin Converting Enzyme. This enzyme in our bodies activates a hormone called angiotensin. Once activated, this causes blood vessels to constrict. This results in high blood pressure and a strain on the heart.
ACE inhibitors inhibit ACE and prevent the activation of angiotensin. This results in dilated blood vessels and a lower blood pressure. Even in people with normal blood pressure, blocking the activation of angiotensin and dilating blood vessels is effective for treatment of the other conditions such as lupus nephritis. ACE inhibitors can preserve kidney function.they may also raise the level of potassium in the blood. Angiotensin blockers share these same side effects.
Angiotensin-converting enzyme (ACE) inhibitors slow the progression of diabetic renal disease. ACE inhibitors can delay initiation of dialysis or renal transplantation. It is also suggested that adding angiotensin II receptor blockers (ARBs) to conventional therapy for lupus nephritis significantly reduces proteinuria.
About half of patients with systemic lupus erythematosus (SLE) acquire lupus nephritis. However, while steroids and immunosuppressive agents are useful, some patients remain non-responsive to these drugs. Doctor's are continuing to test the results of ACE inhibitors and ARBs to treat SLE patients with nephritis.Severe proteinuria in patients with nephrotic syndrome due to SLE is not an uncommon complication and it may lead to end-stage renal failure. Angiotensin-converting enzyme (ACE) inhibitors have had beneficial effects. The length of use of this drug depend greatly upon the reduction of proteinuria and the functioning ability of the kidneys.
I hope that this information has been a little helpful
:lol:
Let us know if you need any more information!!
Best of Luck - Peace and Blessings
Saysusie

Missy
09-21-2004, 07:54 AM
Tdeyne -

I'm on Ace inhibitors (Lisinopril) and it's the only thing that has helped with thte proteinuria. I was at 4300 in my urine and am now down to 322. So, you can see that you are doing pretty good right now! Also, if they already put you on Ace inhibitors, that means that you probably have no kidney function problems, so that's really good news. There are Types 1-4 of Lupus Nephritis. Type 1 is close to normal - Type 4 is kidneys not doing so hot. I guess Type 5 is in it's own category and can be ok or bad.

Good luck, and let me know if I can be of anymore help with info!

Missy

dresbaby
03-17-2005, 06:03 AM
I am confused as to how Missy's dr told her she had lupus nephritis without doing a biopsy or did she have one and not mention it?

Protein in my urine after my hysterectomy was how I FINALLY got a definitive diagnosis of lupus, after years of being told I had fibro and I was fat and needed to exercise and lose weight and I'd feel better. My protein was way up there in the thousands also. My OB/GYN was flabbergasted at the amount of protein in my urine and sent me directly to a nephrologist who did the whole big lab work-up for lupus and kidney biopsy the very next day and bloodwork and biopsy showed membranous glomerulonephritis (not the stage 4 which is so bad, though).

Although I was not happy to have this disease, it was such a relief to finally have a diagnosis, you know?

I went on Plaquenil, completely off NSAIDs because they are so bad for you, and Neurontin and hydrocodone for the pain. Plus I had developed hypertension which docs figured was all related to the lupus nephritis so I went on about 3 different blood pressure meds. Oh, and I had a course of steroids, too.

Next thing I know, my left index finger turns completely black and although it's numb and cold to the touch--it burned me like a hot poker. The pain would wake me up in the middle of the night and I'd be screaming. I didn't have a rheumy at the time because mine retired so I went to reg. MD and she sent me straight to ER, and I was transferred to a larger facility where I was diagnosed with vasculitis. I had a clot right at the base of my hand on the right side of my wrist which was blocking blood flow to the lt. index finger. I was put on Coumadin to thin my blood, and given high doses of pain meds (oxycontin and morphine) because of the terrible pain. Needless to say, I was a zombie when I got home. My finger eventually cleared and I begged off the big pain meds and went back to hydro for reg. joint pains. I was also put on a course of steroids again, plus I had them IV while hospitalized for 5 days.

Well, if any of you have ever been on a blood thinner like Coumadin, you know you have to go in every 1 -2 wks to have a lab test called an INR to make sure your level is good. I don't have transportation and everytime I went my level was either too high or too low, and it got so frustrating, I quit taking the blood thinner. I went along fine (as fine as a lupus patient can be) for a year and then I started having chest pains. I finally went to ER 11/13/04 and it was confirmed I was having a heart attack. I had a heart catherization and had a stent put in. Then on 12/31/04 (Happy New Year to me!) I had a little lesser pain, but still hurting so I went to ER after trying nitroglycerin under my tongue and it didn't work. I was having ANOTHER heart attack. I was placed on Plavix this time and all my BP meds were changed.

Now, I'm doing ok with the heart but I caught that awful flu and it went into pneumonia (previous smoker X 20 yrs) and pulmonary function tests weren't good and I was put on Xopinex breathing treatments and told I had COPD. During all this time, I'm supposed to be going in for a cardiac stress test, but you can't do one if you are sick with pnuemonia/bronchitis and can bearly breathe to begin with, so I'm still waiting to do that.

In the mean time, my left index finger is hurting again and now my ring finger on that hand is turning a little purple. My hands hurt like the devil. I am typing all of this with my rt. hand as I can't use my left at all. Oh, and my left thumb is swollen as big as my big toe! It's awful!

Sorry to post so much, but I wanted to get all this down in one post. I looked at the thread about joint pain, but it didn't mention much about the type of pain I'm having. I'm waiting to see the new rheumy, but he can't see me until 3/31, in the meantime, I'm on a waiting list for cancellations, but I need something besides hydrocodone to help with this pain. I can't stand the cold at all.

Anyone else with swollen fingers/hands that hurt all the time? Any suggestions for relief?

Thanks for any and all replies. I hope to make some new friends here.

dresbaby
03-17-2005, 06:08 AM
Why is there a little phrase *I think your mom's calling time to go home now* in the middle of my post? Was it too long? I tried to edit it out, but it wasn't there when I went to edit???

SoleSinger
11-09-2005, 03:26 PM
I also have been having kidney pain... I also have times when my kidneys THROB but don't actually hurt... But, here's the weird part, my doc says that my kidney function is improving and my protein is getting better... I only have trace amounts of blood in my urine now, but, it seems that I have more actual pain than I was... Especially, when I have my cycle... THEN it kicks my A**!!!! Weird? Am I CREATING this?? Or am I just a freak of nature or WHAT???

Any info is greatly appreciated, as always!!!

Thanks!!

Ariel
11-09-2005, 03:40 PM
self delete

PuertoRican-mom-of-2
11-10-2005, 07:26 PM
I get kidney pain too. My doc says that it shouldn't hurt??? BUT IT DOES!