Anyone only use rituximab for remission?

[kaysee]

My rhuematologist told me it is standard procedure to infuse again with rituxan after 6 months. I was scheduled to do so but had a flare up as soon as I was taken off of the prednisone. I have never had the cytoxin. I improved after the first rituxan treatments but apparently did not go into remission. They did not repeat the ANCA or PR3 test, but could tell as my kidney function was getting worse again. I am now doing my second round of rituxan - 4 months after the first. I am also back on 30 mg of pred.

Headache can be a side effect of the rituxin which is why I am always given tylenol before each treatment.

Karen, dx'ed April 2014

[mrtmeo]

Hi Kaysee,
I am glad u found the reason for the headaches and hope they go away after your next round of rtx.
I also, pray that your kidney function goes back to normal.
I am praying my mom's kidney function gets better too.
I still don't know which drug is better for overall kidney improvements.
However, cytoxan works faster than rituxan.

[MaxD]

I have not been able to find anyone whole only used rituximab for induction to remission.
I have only seen people who had cytoxan first and then rituxan.

Anyone have success with only rituxan?
If so, how long did it take to reach remission?
Did you use a maintenance drug after rituxan?

I was diagnosed last March (sinus, lung, roving joint pains), put on prednisone and had 4 infusions of RTX by early May. All numbers are down close to the normal range now, but it happened gradually (monthly PR3 went from 150 to 120 to 80 to 40 to 30 ...- 20 and less being normal). I'm down to 6mg prednisone and should be done by mid-Dec. Will have one infusion of RTX for maintenance before the end of the year. Other than steroid myopathy (withdrawal symptoms) and eustachian tube dysfunction (better now than at start) I've not encountered any issues. The plan is to use RTX for maintenance, esp. as it is more effective for sinus issues.

Good luck to you.

[mrtmeo]

I was diagnosed last March (sinus, lung, roving joint pains), put on prednisone and had 4 infusions of RTX by early May. All numbers are down close to the normal range now, but it happened gradually (monthly PR3 went from 150 to 120 to 80 to 40 to 30 ...- 20 and less being normal). I'm down to 6mg prednisone and should be done by mid-Dec. Will have one infusion of RTX for maintenance before the end of the year. Other than steroid myopathy (withdrawal symptoms) and eustachian tube dysfunction (better now than at start) I've not encountered any issues. The plan is to use RTX for maintenance, esp. as it is more effective for sinus issues.

Good luck to you.

Thanks Max.
It sounds like they check your levels frequently.
Did it take 6 months to normal or did u reach remission earlier?

[MaxD]

mrtmeao: I'm not sure if there is a standard definition for when remission is reached. Ideally, it would be when prednisone is eliminated and there are no clinical symptoms of active disease. I'm not yet down to 0 prednisone (another 10 weeks to go). Took 5 months to get close to normal on PR3 (but note that PR3 can remain high for some people even when they are in remission; this number cannot be used as an indicator of the disease if it doesn't go down with treatment). Most of my symptoms subsided when I started the prednisone. The repeat CT scan of the lung was clear 4 months after treatment.

I wouldn't generalize from experiences of a few people. I was lucky that my disease was caught early before any organ damage, and treated quickly. If it had taken a few more months to detect, I have no idea how quickly I would have responded to RTX.

[miracleshappen08]

RTX was an answer to prayer to me!! I had been on MTX for 5 years and my body was no longer accepting it so I was flaring up! I had a round in February and March and have been on MTX for remission holding. I'm starting in with some issues again so we are on top of it. I may need another round of RTX but everyone is different and this disease is different in everyone

[mrtmeo]

RTX was an answer to prayer to me!! I had been on MTX for 5 years and my body was no longer accepting it so I was flaring up! I had a round in February and March and have been on MTX for remission holding. I'm starting in with some issues again so we are on top of it. I may need another round of RTX but everyone is different and this disease is different in everyone

Rtx seems to work very well for relapses with Weg's.
It didn't work for remission for my mom who has microscopic polyangiitis and she gets sick on both imuran and mofetil which were working.
Going to see another neph to see if she can do low dose Ctx.

[annekat]

I would not expect RTX to bring someone to remission with one infusion, based on what I've read of people's experiences here. Maybe for some, but not for all or many. I don't think mofetil or imuran are usually used for that purpose in a patient with kidney involvement, although they appeared to have been helping. I think your mom needs more RTX, soon, or as you were suggesting, a good dose of CTX. The dosage is based on body weight and I would not suggest a dose lower than that. I'm speaking of the oral dosages, as I know nothing about the IV dosages.

[mrtmeo]

I would not expect RTX to bring someone to remission with one infusion, based on what I've read of people's experiences here. Maybe for some, but not for all or many. I don't think mofetil or imuran are usually used for that purpose in a patient with kidney involvement, although they appeared to have been helping. I think your mom needs more RTX, soon, or as you were suggesting, a good dose of CTX. The dosage is based on body weight and I would not suggest a dose lower than that. I'm speaking of the oral dosages, as I know nothing about the IV dosages.

Are you referring to one infusion of Rtx as one series of 4 infusions?
My mom had 4 infusions, one week apart.
I went to see another nephrologist who suggested doing a very low dose of Imuran to see if my mom tolerates that and dose every other day.
However, I am going to try a really low dose of Mofetil to see if she tolerates it because that seemed to be working.

[mrtmeo]

I talked to another nephrologist about rtx and he said rtx works very slowly.
He would not answer my question regarding taking another immuno while waiting for rtx to put you into remission.
My mom can't take the standard doses of mofetil or imuran because it makes her sick.
I think there must be some type of interaction between rtx and immune suppressants.
However, I am trying a much lower dose of mofetil to see if it can put my mom into remission.

I would try another round of rtx if I was confident it would help my mom's kidneys and lungs, but there hasn't been a remission with it, yet.
She is 5 months from first infusion and only some of the minor symptoms are gone.