Rituxan, Round 2

[Sangye]

Interesting. So if we go the Rituxan route, are we looking at infusions once a year or so, even if we (and our lab numbers) are good? This is one question I guess I didn't get an answer to when I was in Cleveland. Are you in medical remission, Brooke? I was kind of hoping not to have to take any meds if the Rituxan works for me.

It depends. For my last 2 infusions we waited until my symptoms increased (they appeared before my B cells returned). We delayed treatment as long as possible. Since I have a terrible reaction to the rtx infusions (extreme weakness for 6 wks), this meant losing many months of function due to either Wegs symptoms or rtx reaction. Because of this, Dr Seo decided that we should just do rtx every 6 months no matter what. So I don't need to wait for symptoms to appear or for B cells to return.

I'm not on anything other than 2.5mg pred in between the rtx treatments. I'm hoping to get down to 1mg pred but will probably not be able to get off it completely due to adrenal damage.

[Brooke]

Sangye- She told me that with studies they have usually been giving Rheumatoid Arthritis patients the 2 infusions vs 4. I think she said it was actually ok to do the 2 but since I am doing the infusions at home and I think I am getting more of the Rituxan by doing the 4 infusions, she recommended the 4. She was calculating some numbers, I think to see how much Rituxan I would be getting on doing the 4 vs 2 infusions. Does this make sense?

[aewaustin]

Brooke, Great information! So what test shows that your b-cells are returning? What do you monitor?

[Brooke]

It is a blood test called CD19 or CD20.

[Sangye]

Sangye- She told me that with studies they have usually been giving Rheumatoid Arthritis patients the 2 infusions vs 4. I think she said it was actually ok to do the 2 but since I am doing the infusions at home and I think I am getting more of the Rituxan by doing the 4 infusions, she recommended the 4. She was calculating some numbers, I think to see how much Rituxan I would be getting on doing the 4 vs 2 infusions. Does this make sense?

They must be giving Wegs patients 2 or Dr Seo wouldn't have switched to that protocol. (They've always done 4 at JHU)

I don't understand the need for calculations-- aren't you getting 50% more rtx with 4 infusions? LOL

How are you doing the infusions at home? Do you have a nurse there?

[Brooke]

I am not sure about the amount of Rituxan, maybe I should ask her again? I just know she recommended doing the 4.
I should have said at the Hospital in my home town is where I will be doing the infusions, vs going to Mayo to have them.

[Sangye]

Oh! LOL I was wondering how you were gonna do the infusions safely at home!

[Brooke]

Yeah, that would be tricky!!

[BrianR]

Interesting. So if we go the Rituxan route, are we looking at infusions once a year or so, even if we (and our lab numbers) are good? This is one question I guess I didn't get an answer to when I was in Cleveland. Are you in medical remission, Brooke? I was kind of hoping not to have to take any meds if the Rituxan works for me.

I have the same question as ArlaMo and am still not sure I understand. Is it possible for one to receive the RTX infusion(s), and go into remission and then perhaps not need another infusion until a flare? My understanding is this is how it works with the CTX and pred combo and is it not the same for the RTX pred combo? If Brooke is in remission and feeling well and her bloodwork looks good why the infusion again? Would that not be the same as taking someone who got into remission using CTX and pred and saying..."well, you are in remission now for a year but let's put you back on CTX just to make sure you stay there". RTX and CTX are the heavy hitters to get one into remisssion and after that one is either drug free or on maintenance drugs such as methotrexate. I am surprised to hear that one would go back on RTX while still in remission.

Can anyone help me understand this please???

[Brooke]

I am not sure I know the answer to that but I would certainly think that one could receive Rtx and go into remission and not need another infusion until a flare. But then once you flare, you would probably be put on pred again? I see my Mayo doc this Summer and we will see how I am doing then and I am hoping I can be on a maintenance drug or possibly nothing after my B-cells come back after this next round of infusions. Another thing, I don't think Rtx is as "harsh" on the body as Ctx.