am stumped. On top of my "normal for me " lupus symptoms, including CNS involvement, I have indications of kidney stuff as well.
My doctor who kept throwing meds at me that I reacted very adversely to, is most worried about stroke because of my history of unexplained blood clots (became PEs). Testing in the last year after passing "grit" yet again, showed UTI infection that was promptly cleared up. However, I routinely have non visible to the eye blood in my urine. My blood pressure is high, even though heart caths have shown my arteries to be clean! I also deal with case unknown foot and lower leg swelling on and off again.
All this points to kidney involvement.
I am becoming concerned, pain constantly with me, below one shoulder blade and down to near my waist in the back. (not spinal related) One family member had a kidney to shut down and die, of unknown causes, not found out until a thorough work up during her cancer evaluation. One brother has Crohn's, and we believe she had an autoimmune disorder too, that was never diagnosed.
Cut to the chase - if anyone else here has kidney involvement, could you please share what you do for yourself to minimize damage, what kind of health care pros you see who help you along the way? Dietary measures you implement?
As a newbie, I am unsure hwo to use a search, if there is one, in case this has already been covered. Thanks in advance.
My diagnosis was made by a kidney biopsy. I am currently at stage 4 Nephritis. Immediately stop taking any ibuprofen medications and as for a referral to a Nephrologist that has experience with Lupus. Not all do, but the ones that do usually are very proficient in Hypertension as well because of the definitive relationship between the two.
A biopsy if virtually painless and can show to what extent if any damage you have. Proteinuria is another very common symptom as well as low iron and Vitamin B levels as these are processed through the kidneys and whatever you are taking in by food is being expelled through the urine and not going into the body where needed.
Mine was found after a TIA, stoke and then uncontrollable bp after carotid artery surgery at the in July at the age of 44.
I have had a lot of improvement on CellCept, Plaquenil and most importantly Prednisone.
It is important that you get to the right specialist immediately and do not allow your doctor to put it off.
You are not ignorant...in fact you sound as if you have had quite the journey yourself. I, too have had the B12 injections and the iron infusions. With some improvement in my kidneys I now make sure to take both iron and B-12 supplements. The B-12 I take subligually as it then goes right into my blood stream. The iron is a bit trickier, but sometimes once "jump-started" the numbers will improve on their own.
If steroids are a "no-no" for you, you must find another option and please do not put it off. Unlike some organs, the kidneys do not repair themselves.
I am not currently on dialysis (thank goodness) however, that will very likely be in my future. I do my best to take care of my kidneys now so that it's not an issue later...you know an ounce of prevention.
A Nephrologist is imperative. Just as dangerous as the kidney damage is the hypertension. Women are more likely than men to have heart-attacks before the age of fifty, but with some blood clotting issues heart attack, TIA, and stroke are a real possibility that needs to be addressed.
If you have a BP cuff at home, lie down for 15 minutes and then take you BP 3 times in a row. Use the mid number and chart it. Do this at least 3 times per day and document the activity you were doing prior. I know this is a pain (boy, do I know) but your Nephrologist and possibly even a Cardiologist will need to know this.
I truly hope that you can find something that works well for you and doesn't cause an allergic reaction. I was told that Benlysta may be an option if you are ANA positive (I am not). That may be an alternative, but if you can, in fact find a natural healer that is familiar with the disease I think it is always a good idea to find as many tx's as your can. Also, things like yoga, massage and meditation release natural endorphines which can help.
You certainly have reached the right place for answers.
My kidney involvement is that my kidney function tests (BUN and Creatine) keep elevating , which means that my kidneys are weakening. They have decreased my Methotrexate to see if this is the cause of elevation tests. If it is the medicine then that is easy to correct. If not, then it may lead to Lupus Kidneys (Nephritis).
I try not to focus on this, since there is nothing to do at this time. One thing I can say is that if you want to protect you're kidneys by making diet changes. Do not go on a diet of high protein.
I have been dealing with kidney issues for four years. The big things to prevent further damage are low protein, low sodium and make sure meds do not damage kidney further. They always tell me no motrin or ibuprophin. Also, all my other docs check with my nephrologist before they do anything. Finally, they have me do a 24 hour urine test every 3 to 6 months. Hope this helps.
I have a kidney issue on top of the Lupus called Medullary Sponge Kidney. My body produces mass quantities of kidney stones. I also get infections easy. I have trouble more in my left one. I feel pain for long periods of time, like months. I have seen many doctors for it. Basically you can follow a diet to help but a Nephrologist told me I will hace complete kidney failure by the age of 45. Pfft that. Lupus doctor told me 40. I believe in myself and life and I will fight for it.
Watch your intake of soda and caffeine, to preserve your kidneys. Low sodium diet. Do not drink tap water because depending on your location, there are a lot of minerals. Proteins can effect your kidneys too. Oixides can also effect kidneys and stones but mainly in people that get stones. I have to watch eating things like spinach and beets, even celery because of my situation.
Talk to your doctor about testing your kidneys. I am going to have biopsies done to check mine. The disease I have shows on ultrasounds and CT scans. Its not related to the lupus but kidney issues are. Do whatyou can to make your life easier. Tons of watee and Northlands 100 percent cranberry juice are really good for you. Also blueberries. Good luck.
The 24 hr urine test is a collection of your urine for 24 hours. You will get a container with a preservative in it. Each time you pee you collect it and put it into the container. The container needs to be kept on ice. Do not put it into your freezer just keep it in your bathroom.