Rituxan, Round 2

[Brooke]

Hello,

Just got a call from Mayo about my B-Cells returning. Dr. Keough wants me to do the Rituxan Infusions again. She said she would like me to do the 4 infusions vs 2. I will be starting them in April. She said all of my blood work that I did this month was good and she wants to keep me feeling good and so I think that is the reason for doing the infusions again, even though I am feeling great. She said she doesn't want to wait for me to get sick and then have to go on steroids again. I will see her for follow up this Summer sometime.
Thats all for now

[Chris G]

That sounds like both good news and bad news. Good that they want to be proactive and KEEP you healthy, but, did the rituxan have side effects for you? How long did your first round of rituxan keep you healthy?

[Brooke]

I did not have any side effects with the Rituxan, I had my first infusions almost a year ago and I am feeling great.

[ArlaMo]

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.

[Brooke]

Right now I am only on Symbicort, Bactrim, and my sinus rinses. No Pred right now, I have been off of pred for a few months now, After my first infusions last year, I weaned off of them. I might have to be on a maintenance drug once my B-Cells come back after this next infusion. I hope the Rituxan works for you! So far it has for me!!

[elephant]

Great news Brooke, so happy to hear that RTX is working and it gives hope for everyone who needs to be on it.

[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?

[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???