Turned down for rituximab for Nephotic Syndrome

Kidney and urinary tract
1

Hi Guys

I have Nephrotic Syndrome and membranous nephropathy for two to three years.  My star Specialist has tried a number of immunosuppresant drugs including 6 months worth of chemo without success.  He applied to NHS England for funding for a course of rituximab which has been turned down leaving the future uncertain. Have anyone had rituximab for Nephrotic Syndrome, was it successful, did you have difficulty getting the drug funded.  Would welcome your experiences.

best wishes

 

2

Hi,

So sorry to hear that. Did you use Cyphosphamaide ? I had that and it put me in remission. Rituximab was the next thing if that did not work. It is very dangerous though and they must give you a blood test to see if you carry a certain virus. I carry that virus so Rituximab would be extremely dangerous for me. If you read up about it you should be able to fund it yourself if the NHS won't pay. I have read lots of successful stories about it .

Good luck x

3

Hi

Thanks for replying. I've had a course of Cyphosphamaide plus other stuff but appear to have a 'robust' immune system that refuses to be mugged!  What is this virus that makes Rituximab dangerous.  I'm a firm NHS Supporter and cannot afford to go private. 

Thanks again

4

Hi, it maybe because you already had chemo. I had a course of chemo 2 years ago for a blood disorder which cured it. However, i now have Nephrotic Syndrome and have been told that i can not have chemo/retuximab as you can only have it once. This is not due to funding, it is because it cauces cancer and other problems. I have taken a long course of high levels of steriods which did not work and am now taking tacrolymus, which doesn't seem to be working either. I am told my kidneys are failing. Has anyone taken anything else for this condition? Good luck and God bless.

5

Thanks Jennifer.  I've been turned down purely on the grounds of money and surprisingly, with the wealth of knowledsge out there, on costs as the denial of funding came from the NHS England funding board.  I spent over a year on steroids and other immusuppressants plus the chemo.  My Dr is still trying to get me funding.  I'd rather take the risk of Rituxamab rather than having my kidneys check out whilst I check in for dialysis!  Wish me luck for Friday when I see my doctor

 

6

Husband on 6 month ponticelli protocol. If this doesn't work our doctors said they would try rituximid. I hadn't heard you couldn't get it. I wouldn't take no for an answer. A lot has to do with cost and insurance since rituximid is fairly new and still in some trials. From what I heard it does very well. It is non chemo which is good. We had switched from regular doctors to University Hospital. If your regular doctor can't get it then I would look for nearest univ / college that focuses on these types of illnesses. Google nephrotic syndrome and universities. Contact them and if you don't receive a response soon keep trying. Squeaky wheel gets the oil. This illness is terrible and I wish you all the best and success in healing. Never give up

7

Hi

​My daughter had ritixumab after suffering with NS for over 13 years.  She was under GOSH so was covered by the NHS and she was not given a blood test to detect if she had a certain virus.  The JC virus is something that can happen when administering ritixumab but is very very rare.  She had ritixumab twice with a three month interval after the first one and has now been in remission for nearly four years.  I hope you manage to get the drug funded.