rtx variations on dosage

[WG mom]

Last August, my daughter had a series of 4 rtx infusions of 350 (units?) each. Her rhuemy wants her to undergo a second treatment, but is suggesting either 1 or 2 infusions of 500 each.
Has anyone done this and what are the advantages or disadvantages?
Thank you, in advance, for any information.
WG mom

[MaxD]

I assume the doctor is suggesting the follow-on infusions as maintenance therapy? From what Dr. Spiera tells me, maintenance therapy is still an art more than a science. There are some recent studies that show the benefits of Rituxan infusions for maintenance, especially for patients with sinus involvement. If I recall correctly, my initial 4 infusions were 1000mg each, and I just had one infusion of 1000mg. Dr Spiera said he would have gone for 500mg this time, but for the fact that the disease had impacted my nerves. For maintenance he generally uses a smaller dose than for the original treatment.

There is a standard formula to determine maximum dosage per infusion - it's based on weight and height and you might find it online. I don't understand why the dosage would increase in the maintenance rounds, perhaps your daughter had 750mg infusions the first time around?

Some doctors use 4 rounds for maintenance. Dr Spiera prefers a conservative approach, especially since the long-term effects of Rituxan are not yet well understood.

I don't think I answered your question directly, but just sharing the information I know. Hope it is helpful. Good luck!

[WG mom]

Thanks MaxD for your response. This scheduled rtx is actually not a maintenance treatment, though. She seemed to be doing fairly well, her prednisone was reduced to about 7, (although more recently was having bad headaches with the reduction) and her ENT during her routine exam found the hole in her nose enlarging. So when she saw her rheumy, he wanted to schedule more rtx (she had only had the one series last summer) and then he also increased the prednisone back to 10 to address her headaches.
So, I had not heard of doing only one or two infusions at a higher dosage. Her doc told her the only possible side effect would be a weaker immune system (more so than her usual, I guess) so she needed to be very careful.
If it does the trick, obviously we are all for it. So far, the disease has remained localized in her sinuses and has not spread, so for that, we are all very thankful. Just hoping she can move into remission soon. BTW, she is only 25 years old.
Thanks for all your support.

[MaxD]

I'm truly sorry for all the problems your daughter is going through, and hope she gets into remission with this next round of infusions. I trust her medical team is coordinating treatment with an expert specializing in this disease. It's always good to get an expert second opinion if you can.

[kaysee]

[QUOTE=MaxD;96770] Dr Spiera said he would have gone for 500mg this time, but for the fact that the disease had impacted my nerves. For maintenance he generally uses a smaller dose than for the original treatment.

Max, how does the Dr know the disease has impacted your nerves? I am having issues with shooting pains in my left leg and think it has something to do with the nerves. I am wondering if my leg issue is due to the WG.

[MaxD]

[QUOTE=MaxD;96770] Dr Spiera said he would have gone for 500mg this time, but for the fact that the disease had impacted my nerves. For maintenance he generally uses a smaller dose than for the original treatment.

Max, how does the Dr know the disease has impacted your nerves? I am having issues with shooting pains in my left leg and think it has something to do with the nerves. I am wondering if my leg issue is due to the WG.

Karen, Before diagnosis I had Bell's palsy which basically paralyzed the left side of my face. It's caused by an inflammation in the bundle of nerves that go right through the ear. Could have been a virus as one ENT originally thought, but GPA explained all my symptoms including this one. So Dr. Spiera decided to be on the aggressive side with the maintenance dose.

I imagine you've ruled out sciatica and such for your leg? Once in long while I feel pinpricks on one leg - sharp, painful but there's nothing on the skin. I wonder if some specific nerve gets bothered and acts up in my case?

[LisaMac]

I also had Bell's palsy a couple of years before my Wegener's sympyoms started. Interesting.

[morningsunshine]

My doctor has done 4 infusions to induce remission (twice), and we now plan on doing a 1x dose every six months as a "refresher". I'm not sure what the dosage is on the on every 6 months dose, but I believe we are following a similar protocol to the MAINRITSAN II trial, which would mean I would get 500mg every six months. I'm going to clarify with him the next time I see him!

I recently found this very helpful overview (published Feb 2015) about RTX and the different RTX studies that are going on. I found it to be a great overview for understanding what is being studied and what potential side effects/outcomes of RTX! It might help you too, to know what the trials are for RTX for maintenance.

SMW - Swiss Medical Weekly - The role of rituximab in the treatment of ANCA-associated vasculitides (AAV) (http://www.smw.ch/content/smw-2015-14103/)

[MaxD]

Thanks morningsunshine, for the reference!

[drz]

My doctor has done 4 infusions to induce remission (twice), and we now plan on doing a 1x dose every six months as a "refresher". I'm not sure what the dosage is on the on every 6 months dose, but I believe we are following a similar protocol to the MAINRITSAN II trial, which would mean I would get 500mg every six months. I'm going to clarify with him the next time I see him!

I recently found this very helpful overview (published Feb 2015) about RTX and the different RTX studies that are going on. I found it to be a great overview for understanding what is being studied and what potential side effects/outcomes of RTX! It might help you too, to know what the trials are for RTX for maintenance.

SMW - Swiss Medical Weekly -*The role of rituximab in the treatment of ANCA-associated vasculitides (AAV) (http://www.smw.ch/content/smw-2015-14103/)

Great study with lot of good info.

[rudder]

Thanks for the link. One of my Doctors has suggested RTX as an alternative to the Methotrexate I have been taking since 2001. The Methotrexate has caused anemia which is becoming an issue. This article is helpful.