Wanted: Good, bad and ugly on rituxan

[HazelEyed]

Hello all
I'm new to the forum. Have suffered from Wegeners since 2010 but officially diagnosed about a year later. I've been on a variety of meds . The latest being prednisone and cellcept. They don't seem to be doing the trick. My rheumatologist wants me to do rituxan with cellcept. What has been everyone's experience with rituxan. I dream of going into remission some day. This is such an awful illness. This is the first support group I join and am anxious to hear your thoughts.


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[vdub]

Good question! I may be heading in the same direction, so will be watching the responses, too. Welcome to the forum!

[annekat]

Welcome to the forum, HazelEyed. I can't help you with the RTX because I don't take it, but there are many here who do, who will respond. I just wanted to say this forum has been a blessing for me since 2011 and I'm glad you found us!

[mishb]

Welcome to the forum Hazeleyed. I'm sorry that you had the need to find such a page, but I'm glad that you have.

I also have not had RTX. I guess all of the ones that have, are out enjoying a lovely day.

What are your WG symptoms, and where do you reside.
Hopefully someone comes by to let you (and vdub) know what to expect.

[Pete]

I can't talk about using rtx and cellcept together. I did use rtx and methotrexate together with no problems.

Specific to rtx, I am a little tired the day after the infusion, but that doesn't interfere with my activities. (I'm retired, so I can plan to relax the day after.) As for the treatment, you'll be given an IV steroid (usually solu medrol) and an antihistamine(usually Benadryl) to minimize allergic reactions. The drug itself will be started at a very low flow rate until the staff sees how you react to it. If no problems, the flow rate is gradually increased. The first infusion takes 4-5 hours. Subsequent infusions take about 4 hours. The infusion center I go to at Ohio State is very nice. Each station has a TV and free wifi. The staff distributes water and snacks. Blankets are available if desired.

[Alias]

There seems to be little doubt that it is effective. Whether it is indicated for you may depend on what else has been tried and on the severity of your illness. I responded well to prednisone and MTX, now just taking 15mg MTX by injection weekly, so I have not had to make a decision about RTX. If cost is a factor, you should know that RTX is crazy expensive.

[nagesh]

Hi,
My son also diagnosed during the year 2009, He had rituxan to control a flare in 2013 and 2016, In 2016 It was a horrible flare affecting kidneys rituxan controlled it well, Now, our rehumatologist is considering to put him on rituxan as only maintenance 500 mg infusion at every six months, withdrawing all other maintenance drugs.

[Hege]

Don't know about rtx and cellcept together, but I've had two infusions of rtx. I only felt very tired the day of infusion and the day after and a slight touch of constipation (nothing too bad). I'll have my next infusion in November and then every six months as maintenance.

[MikeG-2012]

I was on Mychophenolate (generic of cellcept) without the RTX. I had a nasty flare-up after 16 months on Mychophenolate, and am considered a Mychophenolate failure. I was immediately given "emergency infusions of RTX" and have been having them every six months since 2013. I have 12 down now.

I have really no side effects, although others have. I, like Pete, feel sluggish the next few days, then bounce back after those days. I have noticed lately that about 1 1/2 months after the infusions, I feel like crud again for a few days. It is always that same time frame. We put it on the calendar last time, and sure enough when it happened this time, same 1 1/2 month period. Strange.

I do recommend that you hydrate well before going in for the infusions. Finding veins in vascular disease patients is sometimes a chore, well on me anyway. I start drinking water the minute I get up and even keep drinking water in the car ride to the clinic.

I hope you do well on RTX, and maybe, like some others, that can be your only drug you need.

Take care,

[Hammy8241]

Set up as per Pete.

Mtx was getting me nowhere so pushed to get RTX. Had it 6 monthly for two years. No side effects. However, I found it 'ran out' after 4 months or so and the symptoms would start to return. After each infusion, I was able to reduce the pred to 5mg but had to increase again as the months progressed.

Another UK based WG (Geoff), got me to get my consultant, to make contact with his consultant, who is the leading WG guy in the UK as he had been in the same situation as I was. He had been put on 4 monthly infusions of Rtx and that had worked for him. Anyway, we got permission for me to do so, and am now off all other drugs and as near normal as i ever was

We are now about to start extending the time between infusions to see if it comes back...or not.

I am not having any other supporting drugs.

Take a book and go for it