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.com/forum/weggie-s-stories/4337-bowel-obstructions-perforations.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. :hug1:

[Pete]

...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).

Hi Sunshine,

By any chance are you taking folic acid to combat hair loss? My rheumy put me on 1 mg/day of it to combat possible hair loss from mtx. Seems to work OK, although my hair is a little coarser now.

[NikkiNicole]

I take Folic everyday too. My hair was falling out. I also use Nioxin shampoo which nourishes the scalp. My hair is kind of coarse but it's healthy because the shampoo also strips all the chemicals off the hair from other shampoos.

[mrtmeo]

Being anca positive and with all of your symptoms, it sure sounds like you would qualify for rtx.
If that is what you want to do, please tell your rheumy right away because once damage is done, it's done.
Nip it in the bud and get this disease in control and don't wait.
If the dr doesn't want to deal with it, find another.

[Dkathleen]

Hi Nikki,
i had four weekly treatments of Rituximab February-March. I had a reaction, but Benadryl and Solumedral helped. It took about 8.5 hours because I had reactions when they attempted to administer it too quickly. It was not too bad, once they decided to slow it down. The last treatment took 7 hours. I have not had any other side effects. I believe it helped a lot. I hope you find something that works. If you are able, it is worth a try.

[Empty bucket]

I had Rtx treatments yearly in 09,10,11. Skipped years 12 & 13. While dosing I had zero side affects and Rtx has been keeping my markers where or close to where they should be. I'm having a flare now and it's been 2 years since my last treatment. I'm scheduled for another round of treatment in 2 weeks.
Your symptoms sounds exactly like what I had when diagnosed in 06. I did the Ctx,Imuran,Mtx, high dose of preds dance for 2 years then along came Rtx. He has been pretty darn good for me.
With all due respect to your Doctor(s) sounds like you need aggressive immediate treatment whether it's Ctx or Rtx.
I'm certainly not telling you to go for it but if you were my sister, daughter etc. I'm scheduling it for you right away.

[NikkiNicole]

I am just going to scream. Can I scream?
Last night, I had a rare night where I would be able to sleep ALL night long ... I woke up feeling like I was dying. My chest was being crushed, I could feel every rib, ever organ, everything. I was literally crying out in pain. It was horrible, I kept trying to stand up and stretch myself taller so that I could hopefully ease the pain. Nope. Dan finally woke up and demanded we go to the ER. I was in tears, screaming and crying.
So off we went.
Of course, EKG showed nothing. The doctor said he'd 'heard' of Wegener's but never dealt with it and really doesn't know what it is. He did blood work, asked what tests they usually do for me to check my markers. I got a Norco, was moved to a room for an X-ray and a blood draw ... I waited. The doctor came back in ... said he thought maybe it was a pleuritic spasm associated with Wegener's but ... he didn't know. And then he sent me home. As I walked out, he was leaving too.
Dan feels like he was rushing me out the door because he was going home.
Of course nothing showed up anywhere. He says my ESR and CRP were fine. I feel like they treated me like I was seeking pain meds and shoved me out the door.
I want to cry. I am so so so done.
The Norco I took is kicking my ass. I am dragging and feel like I can collapse to the floor and sleep for hours.

Has anyone else had a bronchial spasm or even a pleuritic spasm?

[Dkathleen]

I had severe pleuritic spasms the weekend before I was admitted to the hospital. I saw my GP several days prior and he gave me vicodin. He did an X-ray and it was fine at that time. He figured I was having back pains that were amplified by my fibromyalgia. One of the admitting docs said that sometimes these things occur quickly. The X-ray hit a strange window of time and that's why it was fine. Within days I started coughing a lot. I had trouble breathing and had a strange squeaky sound when I breathed in. They did a ct and initially thought I had lung cancer. After suffering over the weekend, they did a bronchoscope on Monday. They admitted me and eventually diagnosed me with mpa.

I am am sorry you are going through this. It is extremely painful. Please stay on them. It happened real quick.

[mrtmeo]

Praying for you that you get your meds changed to something that works.

[drz]

One time i had some strange pains that seemed in my lower rib cage and was told it was probably some irritation of lining around the lungs or pleuritis. I got the impression there wasn't much treatment for it and the pain seemed to subside in a few days.