Rituximab Treatment?

[rfranzi]

Hi all. I am seeing my neph tomorrow and having my intial eval with a transplant team next week. I have a form of kidney disease called fibrillary glomerulonephritis, am pre-dialysis and as of two months ago my creatinine was hovering around 2. My neph. was suggesting a phosphorous binder and told me I had to decide whether or not to take rituximab. I have decided not to, because I just don't feel there is enough proof to warrant the damage to the body's cells and the side effects. Not to mention the $12,000 a shot (I think it is a series of 4-6 shots). All for the off chance that it might slow the progression. I am working on lifestyle changes instead, I quit smoking in January. I am trying to eat right, cook all of my own food and excercise. I am also working on my mental health (and we need a lot of work there - lol). I have already accepted the fact that a transplant, dialysis or both are in my future. My doctors predict on average 2 years until dialysis at the current rate. I was diagnosed last fall.

So, I wondered if anyone had tried this treatment? I would be interested in hearing your experience with it. Thanks in advance, and I'm sending out a prayer for all of us.

[kristina]

Yes, I have been given a course of Retuximab (as it is spelled here in UK).

My case is different to yours, so I think I first need to explain something.

I suffer from MCTD/Lupus. This disease led to my first renal failure in 1971.
I was then diagnosed in 1972 with chronic proliferative glomerulonephritis.

Without Dialysis my GFR slowly recovered to ~40% and remained stable until about 12 years ago,
when another major (untreated) MCTD/Lupus-flare-up triggered a decline in my kidney-function.

My GFR reduced to about 15% and at this point I had to make a decision.

Because of other major complications to my health caused by untreated MCTD/Lupus-flare-ups
my age and my frailty, it would be unlikely for me to survive Dialysis and extremely doubtful
that I would be given a transplant (I already had suffered a stroke), which I probably would not survive anyway.

Therefore, my only option was to halt or slow down my decline in kidney-function.

In desperation I sought advice and I was told that if the cause of the decline in my kidney-function
was due to an MCTD/Lupus-flare-up, a course of Retuximab-Infusions might kill the B-cells
which were responsible for my flare-up.

This treatment was preceded by Corticosteroid-Infusions.

I was not made aware there would be any side-effects, though I was aware myself
that these heavy treatments could cause side-effects.

It is important you appreciate the desperate situation I was in,
because in 2007 I was (again) given only six months before I would be on Dialysis.

It seemed I really had no choice but to try and halt the decline in my kidney-function.

Because I also suffer from multiple drug-intolerance I had to be very careful.

The preliminary infusions of corticosteroids had to be halted quickly, because of my body’s reactions.

I tolerated the Retuximab-Infusions at first, but as the weeks went by,
I suffered more and more from constant MCTD/Lupus-flare-ups,
which the Retuximab had triggered and which manifested in a variety of ways,
one after the other and these got worse as the months went by.

The Retuximab did kill the B-cells, but, as can happen in few cases of MCTD/Lupus,
it did not stop the progression of the decline in my kidney-function.

So, Retuximab did not work in my case and I was left with terrible side-effects
in the form of constant MCTD/Lupus-flare-ups, one after the other.

This was my last attempt to stop my kidney-decline by medical intervention.

From there I concentrated more and more on diet and life-style.

Only later did I find out that Retuximab can cause very severe problems,
so I count myself very lucky that I came through this treatment
and the subsequent MCTD/Lupus-flare-ups it caused,
with my basic health still intact to live to fight another day.

By careful study of my diet and life-style I have managed to slow down remarkably
the decline in my kidney-function which has remained fairly stable
fluctuating pre-Dialysis between 10-12% kidney-function for over two years now.

Of course, one could say this might have happened anyway, but I don’t think so.

I feel my diet and life-style has brought about a control in the decline of my kidney-function,
which I could not otherwise have achieved.

It is everyone’s choice how they go about their life
and one has to weigh-up at the time what seems to be the route to take.

Retuximab, it is said, is a powerful treatment which can help some people,
but not others, and be assured this powerful treatment does have powerful side-effects.

Best wishes and good luck from Kristina. 

[lawphi]

My husband received it to lower his antibody levels for a second transplant.

I have a client that uses it for Wagners with lung and kidney issues.  This drug quickly got the disease under control and allowed his kidney function to return to normal.  He has had a year in remission. 

[rfranzi]

Wow, thank you both so much for sharing your experiences. I did stick with my decision to forego the treatment for now. They have no idea what causes my fibrillary glomerunopheritis, and admit that it is a shot in the dark (pardon the poor pun), at least for me. I need more assurance that it will at least help me before I consent to further harm my body. That is my personal decision. I am having my first meeting with the transplant team next week. My kidney function is around 30% and holding. I don't know if I will qualify, pass muster, or what will come. But I am working on the diet and lifestyle changes that I can make in order to help myself and I am beginning to believe there is merit in this approach even when combined with other treatments. I have, for instance, quit smoking, adjusted my diet in accordance with some guidance from the NW Kidney Foundation's nutrition class, and started a warm water excercise class. I have been fighting a severe depression, anxieties and ptsd, which on the surface have nothing to do with kidney disease. Regardless,  these things do not come easily. But after a year of bad side effects from anti depressant medications that did not agree with me, I don't want to go through more reactions at this time. I am just starting to move again. So, we'll see! I am so glad to hear that it worked for some. Kidney disease is quite insidious, and there are so many varieties! So much to learn....thank you for your helpful feedback! And I wish you both well in your health and in your life! Thanks again.