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View Full Version : Rituxan - some questions answered



ScreaminMeanie
05-27-2011, 03:04 AM
Saw my doc this morning and got all of my questions answered - at least the ones I remembered to write down before I went! LOL

First, the "immediate" results a lot of people see after rtx treatment are a result of the solumedrol, not the rituximab. It takes about 8-10 weeks (from the first treatment) for the b-cells to actually die. I have to go back in a month for bloodwork (or 8-10 weeks after the first treatment) to check the b-cell levels. She said they don't do that test "just for the heck of it" because it's a very expensive test.

Second, once we see that the b-cells have been sufficiently depleted, we can reduce the mtx I'm taking. Not stop, but reduce. She said if all went well, I'd taper down to probably something like 15mg and stay there for "awhile" (she said that wryly, so I suspect that means a year or two :glare:).

Third, she said it was an excellent idea to take extra pred if I'm going to have a particularly stressful or busy day (or have to stay up late, which for me is stressful). She said, obviously, don't do it every day, but every once in awhile is not a problem.

Fourth, when I described my prednisone "crash" that happens every day, she suggested that I split my dose and take maybe 3mg in the morning, 2mg at lunch. I don't want to do that because I already have way too much trouble sleeping, but it may work for some.

Fifth, she said we'd worry about tapering me off the pred once we got me tapered off the mtx and I was stable at that "maintenance" level.

Sixth, I'm going to try leucovorin (folinic(?) acid) once a week instead of folic acid every day to see if it helps with the hair loss.

If I think of anything else we discussed that seems relevant to anyone else, I'll post that, too!

Sangye
05-27-2011, 03:26 AM
Great info! I thought the same thing about the quick responses to rtx-- that it's really due to the solumedrol. Rtx just doesn't start working that fast at all.

I doubt that taking 2mg pred at lunch would keep you up at night. The 2mg will be out of your system by evening. I'm really sensitive to pred and I can do this without getting insomnia.

ScreaminMeanie
05-27-2011, 04:48 AM
Great info! I thought the same thing about the quick responses to rtx-- that it's really due to the solumedrol. Rtx just doesn't start working that fast at all.

I doubt that taking 2mg pred at lunch would keep you up at night. The 2mg will be out of your system by evening. I'm really sensitive to pred and I can do this without getting insomnia.

In that case, I may try it tomorrow and Saturday (nights I can sleep late the next day if necessary because what too much pred does is not let me go to sleep until about 3-4AM). The other concern I have is if the 3mg morning dose will be enough to jump-start my system. LOL

Sangye
05-27-2011, 04:51 AM
It might take a few days for your body to get used to doing it. You could also try tiptoeing into it. Maybe for a few days take 4 mg in the morning and 1mg at lunch. Then switch to 3mg/ 2mg.

ScreaminMeanie
05-27-2011, 04:59 AM
Good idea. I'll try it that way first.

pberggren1
05-27-2011, 06:53 AM
Saw my doc this morning and got all of my questions answered - at least the ones I remembered to write down before I went! LOL

First, the "immediate" results a lot of people see after rtx treatment are a result of the solumedrol, not the rituximab. It takes about 8-10 weeks (from the first treatment) for the b-cells to actually die. I have to go back in a month for bloodwork (or 8-10 weeks after the first treatment) to check the b-cell levels. She said they don't do that test "just for the heck of it" because it's a very expensive test.

Second, once we see that the b-cells have been sufficiently depleted, we can reduce the mtx I'm taking. Not stop, but reduce. She said if all went well, I'd taper down to probably something like 15mg and stay there for "awhile" (she said that wryly, so I suspect that means a year or two :glare:).



Thanks for the good info. I am going to ask my doc if I can start the Imuran next week. I am supposed to be off the ctx on Jun 3 and we have not heard back yet about the rtx. It makes sense to me to stay on the mtx or Imuran while doing the rtx infusions.

Chris G
05-27-2011, 08:59 AM
Thanks for the good info meanie. You don't think the doc meant that we wouldn't have ANY positive effects for 8-10 weeks, right? Cause I'm fairly sure that now that I'm going on 2 weeks post rtx, that I'm starting to feel consistent improvement (albeit minor). Also, my wbc has finally fallen below 11 - it had refused to drop below that level during the 6 months I've been on mtx. Last week (a week after my 1st rtx), it had finally fallen to 8.4. Today I had another blood draw, and I'm eager to see if it has fallen even farther.

Speaking of hair loss.......is that a side effect of rtx? Or is 6 months on mtx catching up to me? I seem to be shedding like dog this week.

I'll be off killing more b-cells tomorrow! I'm taking diuretics with me this time:thumbup:

Kami
05-27-2011, 12:23 PM
Saw my doc this morning and got all of my questions answered - at least the ones I remembered to write down before I went! LOL

First, the "immediate" results a lot of people see after rtx treatment are a result of the solumedrol, not the rituximab. It takes about 8-10 weeks (from the first treatment) for the b-cells to actually die. I have to go back in a month for bloodwork (or 8-10 weeks after the first treatment) to check the b-cell levels. She said they don't do that test "just for the heck of it" because it's a very expensive test.

Second, once we see that the b-cells have been sufficiently depleted, we can reduce the mtx I'm taking. Not stop, but reduce. She said if all went well, I'd taper down to probably something like 15mg and stay there for "awhile" (she said that wryly, so I suspect that means a year or two :glare:).
!

Thanks for all the good info! I am so happy to hear that it could take 8-10 weeks because I still don't feel much better than before I started the rituxan! I am really hoping it will the answer for me for awhile.

I was on 15 mg mtx after getting into remission until my flare in March, then they have increased it to 20mg until I get back into remission. It is my understanding that I will have to stay on mtx with the rituxan.

Thanks for sharing!!!

ScreaminMeanie
05-27-2011, 11:07 PM
I think what she meant is you won't see the FULL effect for that long. I believe the studies checked for remission 6 weeks after the end of treatment, so I'd expect you'd see some improvement before then. In my case, being on such a low daily dose of pred, I'm sure the 100mg of solumedrol each week has done a lot to knock down the inflammatory process, hence my feeling so much better so quickly. It'll be interesting to see what happens after today, when I DON'T have that 100mg jolt of solumedrol as I have for the last four Fridays!

Also? I'm gonna miss the hospital lunches. They were GOOD! ;)

gurinbasra
05-27-2011, 11:36 PM
Thanks for your post, some very interesting stuff here, in particular, I'm going to have to ask about the Folinic acid too instead of the folic acid every day - do you think it's the folic acid and not the Methotrexate that causes the hair loss? I just assumed it was the Mtx.

I've had the Rtx twice now (in the past 3 years) and each time I didn't notice anything until about 3-4 weeks later when little, by little, I noticed small improvements. I'm at 4 months post Rtx, and I'm feeling really, really good! Almost normal, but with the scars of the WG damage - left side of face numb and of course the hearing loss with lots and lots of tinnitus rattling around in my head - never gives me a break. I've been able to come down to 7mg, but I must admit the 7 was hard on me as I had more "not so good days", so I'm going to take a few more weeks before going to the 6 (doing the 1mg decrease once a month). I will also have to ask again about decreasing the Mtx as I've always been 25mg since day 1, he's been hesitant as I've never really reached remission long enough for decrease.

Sangye
05-28-2011, 12:12 AM
Mtx interferes with cell replication--especially fast-replicating cells like hair. So it can cause hair loss as well as changes in the hair quality or color. The way mtx works is by interfering with the metabolism of folic acid.

ScreaminMeanie
05-28-2011, 12:46 AM
The folic/folinic acid protects you from the side effects of mtx, such as thinning hair. My doc thought that it was worth trying the folinic to see if it would a better job than the folic acid.

ScreaminMeanie
05-28-2011, 07:04 AM
Duh. I didn't even see Sangye's last post before I posted the above.

I stopped back in to say that, while the 4mg of pred I took this morning were sufficient to "jump-start" me for the day, apparently my body is not "seeing" the extra 1mg I took at lunch time. I am having severe pred crash this afternoon, worse than I've had in a couple of months.

I wonder if my body is just missing its 100mg Friday dose of solumedrol. LOL