Rituxin questions?

[LovinLife]

Hi all,

I've been on pred and cytoxin since Dec. 2014 when I was diagnosed. I was doing pretty well and beginning to feel human again not long after being released from the hospital after mega doses of both. Then I was reduced to 60mg, CTX125mg. I started reducing the Pred again the latter part of Dec. by 2.5mg per 8 day interval. Finally by mid Feb. when I hit 15mg(alternating with 20mg) daily, I started to feel my symptoms coming back. This being the first "flare" I had experienced (new to all this) I rationalized maybe I had a cold or just sniffles but then my ear went nuts again (deafness, vertigo) causing nausea along with recurring lung pain. I went to my Dr. who confirmed a flare. He bumped the Pred up to 25mg. Reduced the CTX to 75mg as my lymphocytes were very low.

Now after 3 weeks my symptoms are worse and he's talking Rituxin. Is this another cancer drug? Do you have to take it repeatedly? And finally is it something that works faster than CTX to get you into remission? What about Pred reduction? I'd really like to get off Pred or at least a much lower dose. I know everyone is different, but the web makes it sound like a miracle drug everyone should start with! Confused beyond belief!!

Any inputs are appreciated.
LovinLifeswife

[Jaypfei]

Hi Lovinlife,
Sorry you're experiencing a flare so soon after reducing your meds. Cytoxin usually works pretty fast at bringing the disease under control. Your circumstance sounds a lot like my own. Once the cytoxin got the lung issues under control, I was stepped down, as well as quickly stepped down on prednisone which I think triggered my first flare. However, my first flare affected my ears, sinuses and caused saddle nose. I went back up to 50 mg prednisone and then started rituxan. The first dosing was done once a week for four weeks. You will get Benadryl and a dose of prednisone prior to the infusion. It usually takes 6-8 hrs the first time as they will go slow at first to make sure you have no reactions. I didn't experience any problems, other than a mild headache and fatigue the day after.
As for how often??? Some people receive it quarterly, or once every six months. I suppose it just depends on your Dr. I will say that some people feel results quickly, it took till the fourth infusion of the first dosing before I began to feel anything and then probably another month before I felt better. Again, your Dr may follow you up with methotrexate, Imuran or Cellcept as a maintainence drug. Everyone is different. It took two more dosings before I was able to reach a drug induced remission last May. I've been taking Cellcept since August of last year and so far I've been able to keep the disease quiet. Is rituxan a wonder drug???? IT was for me.
Best of luck and let us know how your doing.

[pwc51]

RTX worked for me where Cyclophosphamide failed - pred trending to zero but still on Methotrxate. I have had 3 courses of RTX treatment - each time after a flare. We are looking to see if we can pre-empt the flare by doing a course at 1 to 1.5 year intervals - still being planned at present. It is a wonder drug for me!

[Alias]

Your prednisone reduction was much faster than mine. After diagnosis I had a full two months at 60mg, then gradually stepped down over the course of one year, to the point where I am now, which is 5mg. If all continues OK I should be off it completely in a few months. Possibly your doc will try a slower taper after things calm down again? I've not had to turn to RTX, but many on this forum will tell you it has been very effective in inducing remission. I believe there's also a recent study saying it is effective in maintaining remission in certain circumstances, too. It is hideously expensive, by the way, so you'll want to make sure everything is clear with your insurer.

[LovinLife]

Thanks everyone, after several conversations with my Dr. It's been decided that I've never had remission and the taper of medications was faster than it should have been. So it's back on full strength CTX and Pred for now and save the RTX for when another flare happens. I appreciate everyone's imput, glad to know I'm not alone in all this craziness. Most people just don't get it!

Lovinlifeswife.

[MikeG-2012]

Thanks everyone, after several conversations with my Dr. It's been decided that I've never had remission and the taper of medications was faster than it should have been. So it's back on full strength CTX and Pred for now and save the RTX for when another flare happens. I appreciate everyone's imput, glad to know I'm not alone in all this craziness. Most people just don't get it!

Lovinlifeswife.

Sorry to hear that you are going back on the cytoxin, but it is the first protocol to try, and most wegs docs wait with the big gun Rituxan for later treatment or flare ups.

Hope you do well on the Cytoxin.