So. I went to the nephrologist (kidney specialist) because my rheumatologist and internist both freaked out at a blood test, removed several meddications, and required several more blood tests. The new doc is reassuringly kind and calming. But I found out I have kidneys funtioning at 30%. He also wrote CKD stage 3 on something for my more in depth kidney blood draw.
I’ve known my kidney function was off but nothing to worry about “yet.” I also had a kidney ultrasound. I see the kidney man next week for a follow up. I think I started hearing about the kidney 2 years ago. Since then, I’ve been on cellcept, benlysta. And gout medication. The gout meds were cut back after the bad tests started, but the second he cut back even more, I got gout again. I think gout is a side effect of cell cept, and it wasn’t diagnosed for a year, we thought it was cellulitis. So, I can’t really go off it without pain e have constantly. Anyone have kidney problems? When do I start feeling sick from it? I know dialysis starts if I get to 10%, or lower. I don’t want dialysis. At what point are people being kept alive with machines? I have end of life issues, and I don’t mind living on meds, but machines, I’m not keen on the idea.
I’m actually not so freaked out with the kidney problem , just the pitential dialysis problem.
The ultrasound and new blood tests are going to tell Dr K whether I have lupus in my kidney, or medicine issues. I am on one ansaid a day now,not 2. Also less potassium and less gout medication.
You can support the kidneys by eating lots of asparagus and drinking Nettles tea, of course, ask you doctor if it is all right with your meds…
I think you need to treat this situation with high respect. Could you perhaps take a support person with you to your next appointments? Could you prepare some questions prior? It seems a serious situation & you seem to be a little unsure about it all. Best Wishes to you. Kaz xx
I don't know that cellcept causes gout but gout can cause kidney problems Your meds have been reduced due to the kidneys not functioning well not the gout. 30% you still have a ways to go before dialysis - you should also check with the doctor about dietary restrictions No one wants to go on dialysis but it is not near the burden it used to be and if you qualify for a kidney transplant - they actually do wonderful Dialysis is usually 2 hours or so 3 times a week so you are not tethered to a machine and some people are able to have their dialysis at home A friend of mine had a home machine and did his dialysis while he slept Peritoneal dialysis doesn't involve a machine at all- not a party but not as bleak as you think..Hang in there
I was diagnosed with interstitial nephritis my 1st flare. I was almost on dyalisis but thankful they were able to save me from that. My labs didn’t really show a problem. They decided to do a biopsie after they lit up in a pet scan. And now i was just diagnosed with renal papillary necrosis which is related to the cell cept…
Thank you all! dialysis sounds less threatening than it did. I didn’t know gout can lead to kidney problems. Thanks for the information about dialysis. I just want to know what I think about it before I need to consider it. It would be a good idea to take my sister with me, but she seems to go totally blank in the doctor’s office (I took her with me to the surgeon’s office when I had to have my spleen out to fix my platelet count) She took notes, but they were weird.) i will think of some questions. I’m sorry you have kidney problems, Louters, that sucks.
Hi, hope everything is well and this not a major problem for you, prayers go out to you. …Beverly L.
I have had renal failure with my lupus since I was 14 and 6 yrs ago I had to go on dialysis (I am now 35). It is not fun by any means and if they have any hope of saving your kidneys and keeping you off dialysis I would go with what they offer. The pain of the gout may be worth not going on dialysis if you can find a way to deal with it. I took cell cept for many years to keep my kidneys "alive" as long as we could possible. But at that time cell cept was a new drug they didn't know a lot about and my dr didn't want me on it long term not knowing what potential side effects might be. (Would I ever want children down the road.) I do dialysis 3 days a week and it takes about 4 hours. In the beginning I did not have the best luck with dialysis. The doctor that put me on it did so not knowing anything of my case and just made an assumption call. Because he did it so rush rush I went through several ports and then I had a permanent access put in that failed (again because of rush rush) and so a second access was put in. It works great. My nurses are wonderful at the clinic but I do not like the dr. He's not a very bedside kind of dr. I see his demeanor change from other patients to me and I don't like him. I am on the waiting list to get a kidney but because of insurance problems up until recently I had not been able to go all the way through the process. If you want to ask me any questions feel free to do so. I will try to answer the best I can. Best of Luck to you in all your travels. :-)