Advice needed on treatments to stop kidney failure.

[kristina]

When my kidney function was around 16% I was given a course of intravenous therapy starting with Metholprednisolone followed by Retuximab. It did not work. Has anyone any experiences of the following, which I have not tried:

1) Cyclosphosphamide with or without corticosteroids?

2) Mycophenolate Mofetil (MMF). I have read this is more effective and has a more favourable safety profile than Cyclophosphamide, and, maybe more effective whilst taking Hydroxychloroquine?

I am not wild about any of these but if they may stop my kidneys from deteriorating I have to consider it. Has anyone any experience or knowledge or effects from these treatments? I have read the side-effects can be potentially dangerous. Thank you, Kristina.

[Zach]

Different medications may work depending on the underlying diagnosis of your kidney failure.

[kristina]

My diagnosis of chronic proliferative glomerulonephritis with Hypertension was made in 1972. A biopsy was taken after my kidney function had recovered to about 15%-20%. I do not know what treatment they gave me as the records do not exist anymore. I was in a coma for quit a long time and very ill afterwards, so I don't remember much about that period. My kidneys recovered further and remained stable (~40%-45%) until 1999 when my Creatinine began to rise, which it has done slowly to this day giving me a kidney function at present of around 10%. It was thought that if the cause of my present kidney failure was due to a Lupus/MCTD-inflammation,  a course of Metholprednisolon, followed by Retuximab, might stop the deterioration, but it had no effect to halt the kidney deterioration. This is really all the doctors know as they say it would be dangerous for me to have another biopsy. The Retuximab caused a Lupus/MCTD flare-up, so I feel it may have been very counterproductive. Over the past 2½ years I was told twice that I only have another 6 months with my kidneys but I feel that through my diet perhaps I have lengthened my time, I have certainly controlled potassium and sodium in this way without taking medication for it. My hope is that I can find some way of halting the deterioration of my kidneys. I don't know if this enough information, but any suggestions would be very welcome. Thank you for your help and thoughts.

[Bill Peckham]

If you're controlling sodium I assume your BP is controlled too? What does your BP run? Sometimes kidneys go bad, it sounds like you've been successful at delaying progression; it may be that you've done as well as anyone could have under the circumstance.

[Bill Peckham]

Do you have a dialysis access placed?

[Sunny]

I was told by my nephrologist that when one has extremely low kidney function, the kidneys may gradually just wear out from all the strain over a long period of time. The underlying cause for the kidney damage may be resolved, but the kidneys still remain scarred and the remaining functionaing nephrons become strained and overburdened. The best way to preserve remaining function for a person with scarred kidneys is to treat high blood pressure and take care with your diet.

[kristina]

I have no dialysis access placed. My sodium is totally controlled, and as I have mentioned my blood-pressure is averaging around 125/70 - 130/75 and I shall be working hard to get it lower. I am wondering now if the coma I was in for several weeks when I had my first renal failure in 1971 kept my blood-pressure very low and thereby it helped my kidneys to recover? I find this an interesting point.

[Zach]

I have no dialysis access placed. My sodium is totally controlled, and as I have mentioned my blood-pressure is averaging around 125/70 - 130/75 and I shall be working hard to get it lower. I am wondering now if the coma I was in for several weeks when I had my first renal failure in 1971 kept my blood-pressure very low and thereby it helped my kidneys to recover? I find this an interesting point.

I had my fistula placed a year before I began dialysis.

[kristina]

Did you have the fistula fitted/placed,  because your Creatinine reached a certain level and your Doctor/nephrologist said you have to go on dialysis, or did you show physical symptoms of renal failure such as swollen ankles/face, nausea, scratching, change in taste sensation, change in sleep pattern, seizures, tremors, in other words, all those signs of Uremia?

[monrein]

I too would have the fistula created in order to be ready and to avoid having the permacath if dialysis needs to be started quickly.  10% function is pretty borderline.  You could discuss this with your nephrologist and see what his/her views are.  I do have a huge bias against permacaths, although I've had two because despite my efforts at preparedness I needed to initiate D sooner than I'd hoped.

[Zach]

I had the fistula surgery one month following the kidney biopsy that confirmed ESRD.
A round of Solu-Medrol (methylprednisolone) didn't do anything, so the reason was why wait?

[kristina]

Thank you Monrein and Zach for your comments, I just have done some research in IHD on the different methods on dialysis and I quite understand people's concerns about permacaths and the fistula. I shall have to think very deeply about this. Thanks again, Kristina.