Retuximab protocol

[htpi1543]

Hello everyone

Rituximab is considered 1st line treatment for membranous nephropathy. It would be the ideal drug , if you still have active disease. It works to decrease the antibody that we think causes membranous nephropathy.

9 years ago it was a very expensive treatment ( drug). Now it is affordable

I am contemplating to have this done. Does anyone in this group has any experience with this protocol? Your reply will be highly appreciated

Kind Regards

Sam

[Bet117 NKF Ambassador]

Hi Sam,

I also have Membraneous Nephropathy. Rituximab has been recommended to me by two respected nephtologists if needed.

Studies from the Mayo Clinic have showed its effectiveness in treating this particular disorder.

There are many You Tubes from there concerning this treatment.

I will look around post them when I find them.

Check it out.

Bet

[htpi1543 in reply to Bet117]

Hello Bet117

Thank you for sharing the information. Mayo told me that they would do it if the protein spillage is more than 5 gm

Mine was 2.5gm

This was 9 years ago, and it was still under trial stage.

Are you planing to do this protocol?

My GFR is 19, creatinine 3.09. I am 75, and if I can prevent Dialysis for another 5 years, it will be worth it

It requires kidney biopsy which is scary.

My Nephro in Chicago will discuss with me on my next visit in Dec 2019.

Would appreciate if you can keep me informed of any pros and cons of this protocol

Thank you

Kind Regards

SAM

[Bet117 NKF Ambassador in reply to htpi1543]

Hi Sam,

No thanks needed- ever. My pleasure!

I am not surprised that the Mayo Clinic was unwilling to immunosuppress you at protein spilling of 2.5 as that is not horrific.

I have been told by two nephrologist's including my present is that they prefer not to immunosuppress MN patients unless the protein spilling gets to 4 or above as they prefer to monitor and avoid side effects.

They generally prescribe and ACE inhibitor such as Lisinopril or an ARB such as Losartan to try to reduce the protein spilling as a first line. Are you on either?

I know that this is frustrating as I have felt that way myself ; give me the Rituxomab and be done with it!

Have you been told

" The Rule of Thirds " ?

It has been explained to me by both nephro's and my PCP.

Here is the rule and two links which explain it.

The Rule of Thirds:

A third of the patients may go into remission within a period of time.

A third of the patients may go into partial remission or eventually may require an immunosuppresant.

A third of the patients progress to ESRD.

Mayo Clinic:

mayoclinic.org/diseases-con...

Renal Fellow Network:

renalfellow.org/2009/08/20/...

Remember that this is an autoimmune disorder so many other factors can play a role in it; if you have any other autoimmune disorders such as thyroid, psoriasis, psoriatic arthritis as well, ask.

How is your BP? Any edema? Diabetes? All factors.

I have found that keeping away from high inflamation foods and sticking to a kidney friendly diet which is low in sodium and protein and filled with vegetables and fresh fruits as well as drinking at least 50 oz of water has been beneficial. I have still have had my ups and downs; stress being the nastiest culprit.

My thoughts:

When you see your nephro in December, print out your current labs as well as several past labs to mark patterns. You want to review your creatinine, GFR and BUN levels in relation to the protein spilling and MN with

him/ her as you are concerned about dialysis .

GFR can fluctuate due to many unforseen factors including hydration.

Ask what their opinion is and what can be done.

Take a scribe with you

( my husband scribes for me and hears what is being said) and a notebook with questions so that you don't walk away from the appointment wondering. Put a plan in place.

If it hasn't been discussed before, ask about diet. The first time I saw my present nephro I brought a list of the foods that I eat and reviewed it with him.

Ask about your sodium, albumin, potassium and phosphorous levels and if a Renal Dietician would help.

As far as the biopsy. Absolutely frightening and bone chilling to think of it, but the benefit is that it will give them a clearer diagnosis, any kidney scarring and approximate stage that you are at. This will give them a baseline and how to proceed.

My MN was defined via a 2017 biopsy with a 2.0 protein spilling.

Know who will be performing the procedure; where and ask that they numb the area well.

I felt the anesthesia ( and I was conscious throughout the procedure) initially , and nothing else.

When you are discharged make sure that you stay in bed and rest. I had a preliminary dx within 3 days and final within 1.5 weeks.

Discuss this with your nephro and family members for support.

If in doubt, don't hesitate to get a second opinion before processing.

Remember kidney disorders are not curable but can be managed. Annoying to say, but yield a new and often healthier lifestyle.

A lot of information to process. I am walking and have walked the walk.

Just remember that we are all different and what may work successfully for one of us, may not another, but we are all on the same team. First line is a good medical team!

Please feel free to reach out at any time as I will always reach back.

Stay positive ...

Warmest Thoughts!

Bet

[3Kidneys]

I had Rituximab infusion when I had a rejection episode in my transplanted kidney. They didn’t give me much information on it, but it did stop the rejection. Unfortunately the damage had done irreversible damage to the kidney and I eventually lost it after 9 years. (This was a perfect match kidney which should have hit a 20+ year mark). I did experience a massive headache, although after sitting in a dark room for a couple of hours, it eased up and I was allowed to go home.

[htpi1543 in reply to 3Kidneys]

Thanks for the reply

God bless

[RhenDutchess123]

My Neph recommended it but my Insurance wouldnt cover it....I was told it costs 40,000 a treatment and I may need 4 to 6 treatments...