Bad Reaction to Rituxan - Risks to doing it again?

Hi All,

I'm just wondering if anyone here has gone back for another dose of rituxan after suffering a bad reaction to a previous dose. If so, what was your experience?

I had a really bad reaction to my second rituxan dose a couple of years ago. I had difficulty breathing during the infusion and felt weak, really dizzy and was breaking out in cold sweat straight afterwards. That night I had super high fever, hot and cold chills, muscle and joint pain and rashes all over my body. So it was pretty bad...
but it gave me almost 2 years of remission.

The doctors are really reluctant to give me another dose, but I can't keep staying on pred. So I'm trying to decide whether to risk getting another dose or to take out my spleen. I'm a bit reluctant to take out my spleen at the moment because I really see it as a last resort.

Has anyone else had a similar experience?

I had a similar experience (but no high fever or joint pain) and it included awful head to toe hives. Dr. Lieberman at conference said I should never ever have Rituxan again and said if I needed treatment I should try Imuran next, that good response to Rituxan predicted good response to Imuran.
Erica

Yep, it sounds like you and I had the same reaction Emily and I was told that I wasn't able to be back on it again... I have been on prednisone for 3 years now... every time they try to ween me, not matter slow the weening is, I usually have a drop in my platelets between 3-5 mgs. I don't want to be on pred either... but if I get too low, I bleed out and that isn't fun at all.

I am in the process of being accepted in a clinical trial for Lupus soon (as long as my numbers look good, still trying to get my platelet count high enough to where they are comfortable with starting me), so hopefully that may help my platelets too... we shall see...

It seems that the reactions that occur during the infusions can usually be managed. It's the ones that occur after the infusions that tend to be more severe. If a reaction is delayed, I'd stay away from Rituxan.

Thanks for the responses

Erica: I was told about imuran from my rheumy (I have ITP secondary to Lupus) and she suggested using it as a 'steriod sparing agent'. But my haematologist is not keen as she thinks it's not safe to use imuran if I want to try to get pregnant. I'm 27yo, I don't want to get pregnant any time soon but may consider it in 3 - 5 yrs time. Do you know anything about this?

Kasha: Yeh, the reaction was pretty scary. They say it generally gets worse as your body learns to fight against the drug better. Problem with me is that I need to be on pretty high doses of steriods to keep my count above 30. I need at least 15mg a day and I only weigh 45kg so the doctors don't think it's a viable long term solution.

Emily, that wouldn't have applied to me so I don't have any extra info. If you think you might want to get pregnant I think you should do a lot of research, do they say it is safe to get pregnant after so many years without taking imuran? Often times the risk is only for a few years or so. If the risk is forever, then it's imuran or pregnancy as far as I'm concerned.
Erica

I had a reaction on the first treatment of my second round. Nurse said if you feel anything out of the ordinary to let her know. Well, I started to have tightness in my chest, chills, shaking and shortness of breath. Thought it was just my imagination but it was not going away so I buzzed the nurse. IV was stopped and benadryl was given. Treatment restarted an hour later at a slower rate. Definatly scarey. Will be two years in Oct since last treatment. Last count was 165k.

Hey Dean,

Thanks for sharing. That sounds pretty much like me. Except I only got the tightness and shortness of breath during the treatment and the rest of the other stuff happened that night when I got home. Not something I really want to go through again, especially if it is going to be worse this time around. But when I think about the potential of getting 2 or more years treatment free, I'm very tempted...
Anyways, the doctors are going to give it one more go before taking out my spleen. They will give me a dose very slowly and keep me overnight for monitoring...
fingers crossed!!

I believe it makes a big difference if your reaction is to the first infusion (pretty common, usually no more reactions) or to a later infusion (possible allergic reaction which could escalate). I had zero reaction to my first infusion, then each one after I had increasingly soon and increasingly strong reactions. That's not good.
Erica

That's right, reactions tend to occur during the first infusion and not the subsequent ones. If reactions get worse every time, STOP!

I had a severe reaction to my second treatment, I was fine after the first one, the following day I worked out at the gym and felt wonderful, but my reaction the day after the second treatment was the total opposite, I woke up feeling faint, weak, dizzy, went to the bathroom and had blood in my bowel movement (a lot), I could not even drink a glass of water until 4pm.In addition I had terrible stomach pains for months, and felt weak and at times like I was ready to pass out for at least three months later. Too bad, because on the plus side my platelets remained above 160K for 6 months, I've thought about giving it one more try, but after reading some of you warning about it getting worse if it happened after the first day I think I should look for an alternative.

Is it possible that you had gastritis? Maybe it wasn't a reaction to Rituxan.

Emily, I am with you a Spleenectomy is a last resort for me also. You say the reaction was after your second dose. Did you receive 2 more treatments after the reaction to the second?? The only reaction I had was during the first treatment of the second round. Believe it was because the Rituxin was running to fast. After treating the reaction the dose was slowed down. Running the dose slower may prevent such a severe reaction. Due to the sevarity of your reaction I can understand your concerns with another round. Personally I would give it another try. As Sandi mentioned if the reactions get worse STOP. If you do be sure to check if insurance will cover. I will preach this to all Rituxin posts.
Good Luck.
Keep us posted.

Hi All,

Thank you for all the replies and I hope things have been going well for you all.
I've been offline for a bit and just want to give you an update.

I did end up getting the rituxan again. The doc was very nervous about it and placed me in ICU overnight for observation while I was infused. What they did for me this time around is pre-medicate me with high doses of pred prior to the infusion. I believe this is the new practice for rituxan infusions and I believe it helped me greatly, so for those of you who are considering rituxan, make sure you ask your docs about it.

Anyways, the infusion went really smoothly. I had no reaction and was on my feet 2 days later. Everyone was happy and so the doc decided to ween me off pred to give rituxan a chance to kick in. Then came the problem...I went from 50mg to 25mg to 12.5mg in a matter of days (I really wanted to get off the pred too, so was happy to ween quickly) and exactly a week after my infusion (I was on 12.5mg at the time), my reaction broke through. It was horrible, much worse than the first reaction. My throat closed up and I had trouble breathing so my heart was pumping really really fast. Rashes all over my body, I had such severe inflammation in my joints that I couldn't get dressed. I couldn't do up my zipper or grip a cup to drink water.

Was rushed into ED and they upped my pred to like 75mg (I weigh 45kg). Was in hospital for 3 - 4 days then home for bed rest for another 2 weeks. I was a mess. Anyways, pred eventually calmed everything down and they kept me on high doses for a lot longer just to be safe.

So I guess after that, the docs said DEFINATELY NEVER DO RITUXAN AGAIN...hehehe which was fine with me because I really don't want to go through that again. After everything calmed down and I finally weened off pred, my platlets started coming up back. I was really happy thinking the rituxan worked, even went pred free for like 1 - 2 weeks. Then, when I thought it was all good, I started brusing again. Platelets dropped back to 11. *sigh* so it worked for like 3 weeks...

Anyways, I've really exhausted most of my options and I'm sick of feeling crappy from the drugs that are supposed to help but make me worse...so I'm going to bite the bullet and take out my spleen. They say that if you respond to pred, there's a higher level of success...from my point of view, I'm just really hoping to be drug free for a period of time.

BUT...this is just my story and I think rituxan works so quite a lot of ITP patients, so my learnings from this that I want to share are:
1. Even if you don't have reactions to the drug, should still consider pre-medicating with pred as precaution.
2. If you do have reactions to it and are trying it again, DON'T ween down the pred too quickly afterwards...delayed reactions suck.

OK, hope you all have a good weekend. Take care!!

eM

If a person has serum sickness, you cannot have Rituxan again. Period. Steroids will not prevent it. My second serum sickness reaction came a week after the infusion, just like yours did. I don't think the Prednisone taper did it....it was the timing. Why do these doctors insist on doing this? It's pointless. Studies show that two infusions may be enough to get counts up if a person is responsive, so you really don't have to push to get that fourth one in there. It's not life or death, and getting the infusion is more dangerous than NOT getting it.

Serum sickness is not hard to figure out. The Rituxan reactions all have the same timing because serum sickness is always a delayed response. 14 to 21 days after the first infusion. It's in the literature. A second reaction after Rituxan exposure is 5 to 7 days after the infusion. Everyone I've seen that had serum sickness had the exact same timing and symptoms. I said the same thing about not being able to hold a cup. I couldn't even turn over in bed and I always push through pain. It was a horrible thing to go through.

I'm glad you're doing better, Emily. I also hope you wait a while before having the surgery. Give your body some time to get over that trauma and get some of your immune system back before you impair it any more.

Thanks Sandi,

I didn't know much about serum sickness. I always just thought it was a bad reaction and that there was some hope I might be lucky this time. Plus I got over it pretty quickly last time so I was almost willing to go through it again if it meant I could have years of remission hehehe...

As for my infusions, they only gave me one infusion and reduced the dosage as well. But didn't make one bit of difference to the reaction.

Did they treat you with anything when you presented with your symptoms? The only thing they did for me was up my pred dose and gave me pain relief...so that's why I figured the pred must make a difference. Makes me wonder what would have happened if they kepted me on the high dose the whole time.

I had my last Rituximab dose on Friday 2nd September. I went down with a minor cold wednesday evening though only knew for sure thursday evening/friday morning. I am assuming it is an innocent cold as I went to a drop in Tuesday and one person declared he had cold - and we kept our friendly distance though chatted to him at beginning for no more than 5 minutes. So was it 'him' per se or is it rituximab doing

And I sincerly hope that it will not mean I be kept in hospital at my outpatients check up on monday? I have just signed up to do 10 week course learning basic French (£65) and found out there is a choir that is moving to very near me easily 15 min walk and would like to try them out. I wont be kept in for a what feels like a mild cold will I? I think my platelets are relatively normal as much as one can feel.

SO will my cold be due to rituximab or would I have got it anyways? I am not shivery etc or I would ring the hospital for advice.

The first time I got nothing at the ER because they said it was a virus. They just sent me home. The second time I got steroids and Morphine and again, they sent me home.