How long does Rituxin take to work?

[dutch]

Hello WG community,
My 19 year old son, Michael, was diagnosed in July, 2011. He was taking MTX for 3 months along with steroids, but nodules in his lungs continued to grow. Last week he recieved his first 1000 mg dose of RTX and next week will have his second. How was it for you who have recieved it? When did you notice a difference in your symptoms? I am praying it works! Karen

[kulharv]

Dutch,

I just finished 4 treatments of the RTX and was told by my specialist that it would take a couple of months to know if it has worked. As the prednisone is reduced/tapered down they will have a better idea.

I too am waiting to see if it has worked and tapering down on my prednisone.

Good luck too your son and hope and pray that the RtX works.

[Sangye]

Hi Dutch, welcome to the group. It's always so upsetting to see a young person diagnosed with Wegs. Where are you located (generally)? The most important factor is getting a Wegs specialist-- ie, not just a rheumatologist, but one who focuses entirely on Wegs.

Rtx takes 6-8 weeks to start working. That's counting from the first infusion. He may notice an improvement in symptoms sooner due to the pred if they gave him a big dose with the infusions. I'm surprised that they only used mtx for 3 months if he had lung nodules. Usually that calls for a stronger drug like mtx or ctx.

[Stephanie78]

Johns doctor also said 6-8 weeks. His last appt (September) blood work showed that it was doing it's thing.... (Which was 6 wks after 2nd infusion and 8 since 1st).
And a little advice, listen to Sangye...She is very wise on her information. A WG specialist is one of the MOST important doctors to have on your team.
Good Luck!

[dutch]

Thank you both for the feedback! I am hoping he is on the road to remission with each treatment, each day, each prayer. The good thing is we have a very experienced set of docs following him. He is a patient of Dr. Stone's at Mass General (lead on RAVE trial) when he is at school, saw Dr Hoffman at Cleveland Clinic, and is followed by our own very knowledgeable local rheum, Dr. Grober at Evanston Hospital when he is home. He is optimistic about the treatment and is able to keep up with his classes and workouts.

[dutch]

Thank you, Harvi! I am hoping for New Year's improvements, then, for you and for my son! You will be on my prayer list, as are all of you dealing with this disease. (and your families, especially moms! :) Karen

[pwc51]

For me the effects were almost instantaneous - within about 2 weeks my bloods were almost 'normal' and I was feeling so much better. My rheumatologist was amazed as he knew it could be anything up to 6 months before it could become effective.

[freakyschizogirl]

Hi dutch and welcome.

How brave your son must be to be facing this disease this early on in his life.

I have just had my second RTX infusion and will echo everyone that 6-8 weeks is usually when you start to notice if it has worked. I've overdone it a bit and am now takiing a week off work as I am soo tired - which is very uncharacteristic of me.

Good luck for you, your son and family and I will be hoping the treatment works for you.

[Palmyra]

Hi Dutch,

So sorry for your son's diagnosis, but it sounds as if you are on the right trek regarding the specialists you are seeing.

My daughter was diagnosed at 20yrs, and went from an initial effort with pred and methotrexate, to Rituxin. Her primary involvement was pulmonary. She responded very well to Rtx (rituxin) with in about 8 weeks, as confirmed by chest CT and blood work.

Once stabilized with the Rtx, her biggest worries have been with subsequent infection, which has taken us back to one of the major vasculitis centers several times (we use Mayo, but they are all wonderful). She is now 6 years down the road, still in medical remission with the help of Rtx. She's had some major bumps in the road, but her experts have managed all of them successfully.

You have found a great forum, with plenty of experience. I wish you and your son the best of luck!:thumbup:

Jane, mom of Alison

[Chris G]

I will echo everyone else's timeframe.....full effect is about 8 weeks. But you should start to see steady improvement within a couple of weeks. For me I had instant improvement with my nose. My last nose bleed occurred the day before my first rtx infstion in May. After that....they stopped! Had one on Wednesday of this week.....but that's a whole other story.

Some people believe that the seemingly instant improvement that some of us noticed was from the pre-infusion steroid. But the pharmacist who dispensed my rtx told me that salumedrol is fast acting and short lived.....told me it would be out of my system within a day. So I believe that the rtx began helping me within days.

Good luck to you and your family. I'm so sorry this has happened to your child.

[Sangye]

VERY glad to hear you've got Dr Stone treating your son. You're in excellent hands.

[elephant]

Your son is getting great care now, which is so important for his future life. I am pleased to hear that he is going to Cleveland Clinic.