Rituxan Side Effects

[NikkiNicole]

Methotrexate isn't working. I am more sick than ever. I am nauseous all the time, I have no appetite, I am lethargic and confused. I am forgetful and stutter. It's not working. Of course, the confusion and forgetfulness never happen with the doc nearby so they never take that seriously. I am over it. I have had abdominal pain through the last three injections I've given myself that is awful. It's definitely my body trying to say that something is very wrong.
So I asked my rheumy about Rituxan because I know someone who has similar disease involvement to mine and she did them. I know I am a more mild case of Wegener's but at this point I am more miserable on the medication than off! That stuff I can deal with.
Today I had an epic 15 minute nose bleed. Seriously?!
My doctor is hesitant. She says there are VERY serious side effects and reactions. She wants to discuss them with me. I looked up the drug and of course there's the usual "side effects include: death" but this also seemed more scary than the usual side effects list.
Should I be worried? I am thinking an infusion every couple of weeks is MUCH better than this weekly injection of nastiness that makes me ill for 4-5 days before I turn around and do it again.

I honestly hate everything about my life at the moment. I hate how I feel. Right now, all I want to do is go lie down. I'm dizzy, I am having awful heart palpitations that are making me lightheaded, I can't turn my head all that much or get dizzy. I am so exhausted and run down. I can't deal. I want to cry. Like ... for real, cry.

[mrtmeo]

Hi Nikki,
I have a friend that took mtx and had her digestive tract rupture.
You may want to try a different drug.
There is no way the mtx is working if you are feeling that bad.
I fear the mtx reactions far more than the rituxan.
My mom had little to know reactions from the rituxan and she is 76 years old with copd.

If you are feeling that bad, don't wait.
Get someone to help you right away.

dodi's daughter died because drs ignored her digestive pain due to vasculitis.
http://www.wegeners-granulomatosis.c...forations.html

[NikkiNicole]

I feel more awful by the day ... literally.

[Pete]

Hi Nikki,

I had two rtx infusions in October '13. The only side effect I had was mild fatigue the day after each infusion. The fatigue didn't interfere with my activities. It took about 6-8 weeks until my labs returned to normal. I've done very well since. Hope it works well for you. Just don't expect immediate improvement.

[mrtmeo]

Nikki,
Are you ANCA positive?

[NikkiNicole]

I am ANCA positive. It isn't as high as it was at diagnosis, but it's high. It's never gone back to normal

[im so blessed]

Nikki, I look at ur profile pic and only one thought comes to mind."There in is a strong woman" Correct me if i'm wrong, but you look like a person who has and can fight hard....i'm so sorry you have to though. Maybe it won't be this way forever. Hugs

[blu4runner]

I started Rituxan in Aug 2013 when I had a flare. Was on methotrexate injections when the flare happened. Had 4 weekly rituximab infusions and now I get them every 4 months and am down to 2.5mg prednisone daily.
I have no side effects from the Rituximab at first I was on a preventative dose of Bactrum to prevent infection but overall am very happy with the outcome. Ay first I wasn't sure the rituximab was working but it takes 4-8 weeks to get the full benefit from it.
I was able to get in a clinical trial so the infusions are free which is also a great benefit.

[pwc51]

I have RTX to control the flares but remain on MTX injections throughout. I have been on them for nearly 4 years and used to feel ill for a couple of days each week. Miraculously about 3 months ago that problem went away and now I inject weekly with no adverse effects (most strange!).

I believe death from RTX is rare - the most likely thing to happen is that you react to it during the infusion, in which case they slow down the infusion and usually it can continue without a problem. (so the nurses told me on my last visit).

It sounds as if you may need the bloods checking as you should not be feeling as bad as you sound?

[morningsunshine]

Hi Nikki,

I had four infusions of RTX in May-June and I didn't notice any side effects from them. The only very minor thing was that I fell asleep during the infusions because of the benedryl they gave me and was tired for the rest of the day. They also have to give high doses of IV steroids with the RTX, but I was on 60-80mg of pred anyway, so I didn't notice any difference.

I do have to say that while the doctors all thought RTX was the best course, the nurses who administered the RTX seemed a little worried when they administered it. The first time, the nurse had to go and read about it because she had never heard about it and she checked on me constantly to make sure I didn't have any adverse side effects.

Also, my first RTX infusions were really long--I think the first one was something like 7-9 hours, because they were worried about side effects. By the fourth infusion, the time was down to about 4 hours.

The RTX put me mostly into remission, although my sinuses didn't heal as quickly as my doctors would have liked, so they put me on MTX too (side effects: minor fatigue for a day and hair loss, but nothing like you've been going through).

Good luck making a decision and I hope you feel better soon! I'm so sorry that you're going through this.