Question about kidney symptoms

[makabe]

Hi, everyone,

It has been a while since I have posted. Since diagnosis in Nov. 2011, I have mainly had sinus/breathing/joint issues, but not kidney problems. That said, I have major kidney stone issues, but no one believes it is related to GPA. I have been on injectible MTX since October 2014 (switched from oral, started in July 2012) along with more rounds of pred than I care to count. Right now, I am still on MTX, 30 mg. of prednisone daily, and started a clinical trial for Orencia (so not sure if I am getting the drug or not.) For several months now, I have had occasional swelling in my ankles (something I have never had in my life.) In the last three weeks, the swelling is significant and fairly constant. It will go away when I go to sleep at night, but is back within an hour or two once I get up in the morning. I am drinking about 100-120 oz of water a day to stay hydrated, which I would think would flush things. I am not allowed to take a diuretic b/c of a heart issue.

I can't shake the nagging doubt that something is going on with my kidneys. None of my docs seem particularly concerned at this point, but I am getting nervous. I want to trust what they think! My last labs did show a small amount of blood in my urine.

I don't actually know what the symptoms/signs are if GPA affects your kidneys, since that has never been my issue. Should I be concerned? What should I be looking for?

TIA.

[Pete]

A comprehensive metabolic panel and a urinalysis with microscopy should give your docs an idea of what all may be going on with your kidneys. My rheumy looks at the creatinine level in the CMP and for blood in the urine.

Hope you get some answers and relief soon.

[makabe]

Thanks, Pete.

That is good to know. My creatnine looks good, right in the middle of "normal" range. That makes me feel better... I will wait patiently to talk to the doctor. :-)

[Tom]

Hi, everyone,

It has been a while since I have posted. Since diagnosis in Nov. 2011, I have mainly had sinus/breathing/joint issues, but not kidney problems. That said, I have major kidney stone issues, but no one believes it is related to GPA. I have been on injectible MTX since October 2014 (switched from oral, started in July 2012) along with more rounds of pred than I care to count. Right now, I am still on MTX, 30 mg. of prednisone daily, and started a clinical trial for Orencia (so not sure if I am getting the drug or not.) For several months now, I have had occasional swelling in my ankles (something I have never had in my life.) In the last three weeks, the swelling is significant and fairly constant. It will go away when I go to sleep at night, but is back within an hour or two once I get up in the morning. I am drinking about 100-120 oz of water a day to stay hydrated, which I would think would flush things. I am not allowed to take a diuretic b/c of a heart issue.

I can't shake the nagging doubt that something is going on with my kidneys. None of my docs seem particularly concerned at this point, but I am getting nervous. I want to trust what they think! My last labs did show a small amount of blood in my urine.

I don't actually know what the symptoms/signs are if GPA affects your kidneys, since that has never been my issue. Should I be concerned? What should I be looking for?

TIA.Those were my early symptoms and I was dx'd with RA and the next year I flared and all my issues came together like a puzzle.
I have kidney involvement but they are functioning normally and the Dr says to keep doing what ever it is that I am doing because they should not be working I destroyed part of my kidneys from the wegs!

I have a lot of trouble with edema and I have questioned whether or not this was related to the kidneys and told that it was doubtful!
I also have COPD and the pulmonary Dr says that it could be caused from the fluid from my lungs and the body not being able to process excess fluids, or some such thing!
What I do know is that when I swell up, its harder to breathe or walk. But the legs ache also!
I take Lasix, and they want me to take it daily but its hard on my bladder and me in general! I have made a point to ask for a change in that med but cant do it right now they tell me! I take it as needed and usually at least 2 times a week!
What has helped with the swelling to a point is cutting sodium out of my diet and limiting as much as I can!
I am in remission so I just keep doing what they tell me and work with the swelling! I can also understand your concern for the kidneys as I also have diabetes and think about things associated with that also.
I've come to believe that it is all part of the disease and is a evil in this disease that wont go away for long periods!
What you have going on is certainly something that the Dr needs to address for you!
I have my sinus worked on at least once a year and the ENT says there is no wegs that he can see causing my sinus problems, even though I have confirmed Wegeners!

[Bing505z]

I don't actually know what the symptoms/signs are if GPA affects your kidneys, since that has never been my issue. Should I be concerned? What should I be looking for?

TIA.


What we know: GPA and microscopicpolyangiitis (MPA) both cause blood vessel inflammation, which can lead toorgan damage. The kidney is affected in 50% to 80% of patients with either GPAor MPA diseases.
Fact:MedicationContributors to Kidney Stones
- Steroids: Long-term corticosteroid (Prednisone) use can increase enteric absorption of calcium,leading to hypercalciuria and an increased risk for calcium-containing stones.Chemotherapeutic agents: Certain cancerchemotherapies lead to cell breakdown and can cause uric acid stones(Methotrexate is a chemo drug) ~ Link: Medication Contributors, Kidney Stones , UW Health, University of Wisconsin Hospital, Madison (http://www.uwhealth.org/urology/medication-contributors-to-kidney-stones/11224)



Found this study, and it will show a very, very smallamount of people developed stones will takin MTX: Summary: Kidney stonesis found among people who take Methotrexate, especially for people who arefemale, 50-59 old, have been taking the drug for 2 - 5 years, also takemedication Folic acid, and have Rheumatoid arthritis. We study 129,925 peoplewho have side effects while taking Methotrexate from FDA and social media.Among them, 451 have Kidney stones. Click the link and scroll down on the pageand you will see the stats etc. Rare … but a possibility.
Link: http://www.ehealthme.com/ds/methotrexate/kidney+stones (http://www.ehealthme.com/ds/methotrexate/kidney+stones)


Blood inyour Urine:You can test for this at home:
How is kidney involvement detected?
Onemeasure of kidney function is a blood test called the serum creatinine. Arising value indicates that the kidney has already experienced significantinjury.
What is a urine dipstick test and why is itimportant?
Beforeserum creatinine rises, the first sign of injury is the presence of blood inthe urine. Blood in the urine usually can’t be seen by the naked eye. A ‘urinedipstick’ is a simple device that can detect blood in the urine. The test isperformed by the individual patient. Urine dipsticks are availableover-the-counter at many drug stores.
If apatient with GPA or MPA has never had blood in their urine, finding it for thefirst time would be an important sign of early kidney involvement. Response totreatment is most effective and successful if kidney involvement is detectedearly, and especially before serum creatinine levels start to rise. Notdetecting the first signs of kidney inflammation may lead to unrecognizedkidney failure.
What are the benefits of using urine dipsticktesting?
Usinga urine dipstick is a practical approach for both patients and their doctors.By having the test done at home, patients won’t need to make frequent visits totheir doctor’s office merely to have a urinalysis performed by urine dipstick.Also, doctors won’t need to examine urine under the microscope as frequently.
In what types of patients will urine dipsticktesting be useful?
Performinga urine dipstick test is practical for:
· Patients with GPA or MPAwho have never had blood in their urine. These patients should perform theurine dipstick test about once every 1 to 2 weeks.
If the test result is positive, the doctor should be called immediately. He orshe will confirm that the test is positive or refute the results. (Sometimesthere is an error in reading or interpreting the results.) If an abnormalresult is found, the physician will look at the urine under the microscope tosee if there are other signs of kidney inflammation. Serum creatinine would beobtained to determine if a change in kidney function has already occurred.
· Patients who havepreviously had kidney involvement and have subsequently done well and theirurine has returned to normal. In these patients, the urine dipstick can be usedas a monitoring tool.
Forpatients who have already have kidney disease, effective treatment may improvekidney function, but blood in the urine might persist for as long as a year andin some patients even longer. In this setting, the urine dipstick test taken bythe individual patient may not be very helpful.
What else would be helpful to know?
Patientsand doctors should know that there are many different causes of blood in theurine. Some examples include: urinary tract infection, kidney stones, orbleeding from a kidney cyst. None of these issues would be related to GPA orMPA and each would require a different approach than that provided for thesediseases.

Inbrief, a dipstick test of the urine can be an extremely helpful diagnostic test-- performed by the patient -- to help guide the way to receive the bestpossible care.
Link: http://my.clevelandclinic.org/health/diseases_conditions/hic_Wegeners_Granulomatosis/hic_using_urine_dipsticks_to_detect_wegeners_granu lomatosis (http://my.clevelandclinic.org/health/diseases_conditions/hic_Wegeners_Granulomatosis/hic_using_urine_dipsticks_to_detect_wegeners_granu lomatosis)



We do knowthat swelling of any kind can be caused by many things (GPA itself), yet theculprit can be found. Keep this in mind:

Many factors— varying greatly in seriousness — can cause leg swelling.



Leg swellingrelated to fluid buildup:



Leg swellingcaused by the retention of fluid in leg tissues is known as peripheral edema.It can be caused by a problem with the circulatory system, the lymphatic systemor the kidneys. You may also experience swelling due to fluid buildup aftersitting or standing for a long time.



Factorsrelated to fluid buildup include:

•Acutekidney failure

•Cardiomyopathy(disease of heart tissue)

•Chronickidney disease

•Cirrhosis(scarring of the liver)

•Deep veinthrombosis (DVT)

•Heartfailure

•Hormonetherapy

•Lymphedema(blockage in the lymph system)

•Nephroticsyndrome (damage to small filtering blood vessels in the kidneys)

•Painrelievers, such as ibuprofen or naproxen

•Pericarditis(swelling of the membrane surrounding the heart)

•Pregnancy

•Prescriptionmedications, including some used for diabetes and high blood pressure

•Sitting fora long time, such as during airline flights

•Standingfor a long time

•Thrombophlebitis(a blood clot that usually occurs in the leg)

•Venousinsufficiency, chronic (leg veins with a problem returning blood to the heart)



Link: http://www.mayoclinic.org/symptoms/leg-swelling/basics/causes/sym-20050910 (http://www.mayoclinic.org/symptoms/leg-swelling/basics/causes/sym-20050910)







Dear Makabe,


Do not delay any further and make an appointment to see a Nephrologist. Don't rely so much on that Rheumatologist, let him/her treat the GPA and let the Specialists take care of the complications. In the beginning my kidneys took a dive, but the Rituxan turned it around 100%. I had swelling in my ankles and legs in the beginning also.


note:


Vasculitis can affect any part of the body. The chart below names parts of the body affected by vasculitis and the doctor who specializes in that body part:


Affected Body Part


Doctor




Kidney


Nephrologist




Joints


Rheumatologist




Lungs


Pulmonologist




Skin


Dermatologist




Sinus/Nose


ENT




Trachea


ENT




Nerves


Neurologist




Gastrointestinal Tract


Gastroenterologist




Eyes


Othalmologist





link:ANCA Vasculitis (http://www.unckidneycenter.org/kidneyhealthlibrary/anca.html)

[makabe]

THANK YOU so much for all of that info. Hugely helpful. I realllllly appreciate it. The doc called today and said the ankle swelling is most likely due to prednisone (timing corresponds well) and that if it's not better by the time I see him in a few days, we'll figure something out. I do see a truly great vasculitis/GPA specialist. That helps me stay a bit calmer! (Not totally, but a bit!)

[Mas78]

For me my kidneys had a burning sensation when I was sick, and by the time I was admitted to the hospital my urine was very dark. and for several years after I was off treatment they would get the burning sensation and then for a short time thereafter my urine would darken some.

[Bing505z]

THANK YOU so much for all of that info. Hugely helpful. I realllllly appreciate it. The doc called today and said the ankle swelling is most likely due to prednisone (timing corresponds well) and that if it's not better by the time I see him in a few days, we'll figure something out. I do see a truly great vasculitis/GPA specialist. That helps me stay a bit calmer! (Not totally, but a bit!)


You're very welcome...no problem at all ...

Excellent input from your Doc. Yup pred' can also cause swelling...and it's great to see that both you and your physician have a sense of urgency

[kaysee]

I have kidney involvement and despite trying to maintain a low salt diet and drink plenty of water I still have edema in my feet and ankles. I am on lasix which helps but by the end of the day the swelling is quite bad. My dr told me to try pressure sox. You might ask the dr about it.

[PattyL]

I have kidney involvement for about 2 yrs now. Waiting for a kidney biopsy this month. I was scheduled but due to infection I could not have the biopsy. I 'm also experiencing swelling and am on lasix. At this time I am on 30mg prendisone just reduced from 40mg many side affects this time, after the biopsy the Dr will start another treatment. I was in remission for many years now..with this flare it is the worst. I was dx over 20 yrs ago.

[Mas78]

For those that may need compression socks I highly recommend the Jobst brand. I've worn them almost daily (on just one leg) for over a decade due to vein damage from a DVT. I've tried other cheaper brands but they don't last as long.
I prefer the 20-30 mmhg rating ones. the 30-40 can be difficult to get on and off for me at times.
here is a link that you can look up which ones you may be recommended to wear http://www.discountsurgical.com/content.asp?contentid=14