Rituxan side effects - final update

So had second treatment today!

Having some issues with being naseated after treatment taking 12hr gravol seems to be helping.

Also not sure how to describe it but my skin is sorta tingly almost like it is super sensitive feeling almost like it is itchy/ crawling. My feet hands legs feels so weird never had this before!


Has anyone had this type of reaction before?

No, but you should mention that to the doctor. Sounds like Paresthesia. You don't want that. I don't know if it's a side effect or not.

Spoke to doctor in the night because it was so bad. Doctor says he's never heard anyone complain of s symptom like this in all his years!

His advice take tylenol

His office just called to see if I was still having issues. It is still going on so I have no idea what to do!

Sandi looked up the word you said I have the pins and needle type feeling. No loss in fucntion of arm or leg strictly just a feeling.

Is it getting any better or worse?

The boxed warning on the label describes "severe" mucocutaneous reactions that have occurred.

If you see any signs of rash, blistering, or peeling, report it right away.

No rash or blistering!

It is the sensation of that pins and needle sensation you get when your foot goes to sleep!


Just the feeling I have full use of my right arm and leg but the feeling just won't go away!


PS: the doctors office called me this am wanting to know how I was feeling I was half asleep and couldn't tell 100 percent at the time I still felt it but not as bad. Now that I'm fully awake it is back to driving me nuts again! UGH!

So hemo said it is not a side effect that he knew of he did say if it got worse to urgent care. So I did and after 4hrs in urgent care and catscan later! The doctor there said it has to be a side effect of Rituxan. Than said my hemo was a good doctor and I was in good hands!

So smarta$$ here says than I guess I'll just keep taking tylenol! Urgent care doctor says that won't help so I said that what hemo told me too do!

UGH! have I told you guys lately how frustrated I am!

Can you try something like benedryl? Maybe it is an allergic reaction....

I'd ask for an MRI.

Julia:

I have Paresthesia and still have use of my arms and hands. Where did you read that there is loss of use? That usually takes many years to occur. It could also be peripheral neuropathy. Both are listed as side effects of Rituxan.

In Study 6, the following adverse reactions were reported more frequently ( ≥ 5%) in patients receiving Rituxan following CVP compared to patients who received no further therapy: fatigue (39% vs. 14%), anemia (35% vs. 20%), peripheral sensory neuropathy (30% vs. 18%), infections (19% vs. 9%), pulmonary toxicity (18% vs. 10%), hepato-biliary toxicity (17% vs. 7%), rash and/or pruritus (17% vs. 5%), arthralgia (12% vs. 3%), and weight gain (11% vs. 4%). Neutropenia was the only Grade 3 or 4 adverse reaction that occurred more frequently ( ≥ 2%) in the Rituxan arm compared with those who received no further therapy (4% vs. 1%). [See Clinical Studies.

Paresthesia 12 %

www.drugs.com/pro/rituxan.html

Sandi It could be many things but as long as my doctor says it can't be a side effect there isn't anything I can do! Next Thursday I will talk with my doctor about it. Maybe I'll get smart and print off something to show him and see what he says.

I probably read that info online somewhere you know in the places doctors warn us about getting misinformation from!

So the only question I have to ask myself is what is the lesser of two evils. Meaning If Rituxan gives me another long remission is it worth the risk that this (pins/ needles, skin crawing) could be permanent!

I probably read that info online somewhere you know in the places doctors warn us about getting misinformation from!

How about showing your doctor the manufacturer's full prescribing information and highlight the word "paresthesia" in Table 2?
www.gene.com/download/pdf/rituxan_prescribing.pdf

Even if it is a side effect there might not be anything you can do about it. If it continues, you can only treat the symptoms regardless of what caused it. I hope it's transient, Julia. Mine started that way (quickly); just woke up one morning and the second I got in the shower it started, felt like sleet and hail was hitting my arms and legs. It wasn't from Rituxan though, just another Lupus symptom.

Is it subsiding at all? It sounds more like neuropathy if it's pins and needles. Paresthesia is more tingling, skin burning, creepy crawly sensations. I have both.

No, I wouldn't think pins and needles are worth ITP remission. The problem with neuropathy is that it damages nerves which then damage muscles. I've lost so much muscle that my activities are pretty limited. It's also very painful and uncomfortable, and can progress and get worse. You probably already have enough of a therapeutic dose in you so it might not matter if you stop.

We don't know for sure that Rituxan caused it though. It could be a few things...B-12 deficiency being the easiest to treat.

Winnifred wrote: Meaning If Rituxan gives me another long remission is it worth the risk that this (pins/ needles, skin crawing) could be permanent!

Having Idiopathic PN which keeps getting worse (and having muscle damage due to it), I'd say nope!

Your doctor - I'm not sure he and I would get along at all and I'd probably have fired him by now. Has he ever heard that one should never say never? That is what he is doing when he tells you "it can't" be a side effect - there is a first time for everything.

I have parethesias....skin crawls, tingles, sometimes a burning feeling. They drive me absolutely crazy! I have them when my ITP is active, when my hemolytic anemia is active, and sometimes when I have a cold or sore throat. I had them during and after Rituxan treatments. For me I cant be sure if they were caused by Rituxan or just that I was continuing to have active blood disorders until a couple months after the last rituxan treatment.

Julia-I hope you are doing better and the tingling stops.

Sandi - From looking up both Paresthesia and what I know of neuropathy more and likely my symptoms would suggest it is Paresthesia.

Do not believe I am lacking in B12 as I have had levels check in the past and they were normal. Currently take a B complex with B12 in it!


Melinda - He is my only option he is the closest doctor to me! The next option is over 1hr away and I do not trust any of them either!

Rob Thank you for that information. Now I just need to find that from the Canadian manufacturer. I will put that link onto my phone and at least I will have something to show him!

It has subsided not 100% gone but is better!

Glad to hear that! Maybe it's just a flukey thing.

Sandi I'm hoping it is a fluke. If It happens after the next treatment I may just say no to the last one!
I found the manufacturer report for the Canadian made rituxan and emailed the link to my phone than found out I couldn't open the link for some stupid reason.

So I downloaded the PDF and hoping to send it to myself so I have it on the phone!


I have to ask my doctor lots of questions when I see him Thursday! Starting with what did you say to the dentist because now she won't pull my tooth and now I have to go to a dental surgeon??

So is it gone now? If it happens again, I definitely wouldn't go for the 4th. You really shouldn't need it anyway.

On the subject of unusual side effects from Rituxin--

I had posted that I had a change of sense of taste with Rituxin- water tasted delicious! It lasted 6mos. After 6mos platelets started dropping and water went back to tasting ordinary.

This thread motivated me to look deeper. Found out that its called dysguesia- disorder of sense of taste. Out of 10,000 reported incidents of Rituxin side effects to the FDA, there are 30 reported cases of dysguesia. So I'm not alone. yay

Found this list of side effects that included your parenthesia description, Winni- and less commonly my experience. good luck with your 3rd time!

www.mayoclinic.org/drugs-supplements/rituximab-intravenous-route/side-effects/drg-20068057

Julia I know he's your only option, but you don't seem to like or agree with him. The one an hour away is just as bad?

Good luck with the next round of Rituxan!

Julia, I hope that the next round goes easier for you. I wonder if it would make sense to drop back to the low-dose dosage for your last two rounds, or if they are even necessary.

However, Ellen had a pretty rough time of it last week (chills and nausea) even though she had the low-dose version. They are starting her second dose of Rituxan at this moment. They have added dexamethasone to the Tylenol and Benadryl pretreatment. I hope that takes care of it.

Do I remember correctly that the first dose of Rituxan is the worst, and subsequent doses much easier?

Poseymint - I remember my son saying that water tasted different after rituximab, so it not jusy you

Rob:

Yes, generally that is how it goes. We've been seeing some strange stuff though lately so I wouldn't count on that rule.

Rob - Sandi is correct those of us who had a rough time on the first dose do not usually have a reaction or issue with the second dose! That said you do know that the low dose option actually has more in each dose!

Melinda - He is my only option the doctors an hour away are the ones that direct this doctor. My problem is I have done too much research over the years.

Poseymint - That is why I posted the side effect here my doctor said it wasn't. Than I come here I am reminded to research and low and behold I do not feel so stupid because it turns out it is a side effect! So keep researching we as patients sometimes know more than our doctors especially when comes to us!

Sandi - I would say it is gone than I have a reminder of what it felt like than it is gone again!

As expected, Ellen's second dose went much more smoothly: no chills or nausea, just kind of wiped out afterward, and trouble sleeping due to the 10 mg dexamethasone pretreatment.

Julia, there are other protocols which do use a higher dose than the standard, but the low dose protocol to which I am referring is much lower than standard. The standard dose is based on patient size and is typically around 700 mg per dose (375 mg/m2) X 4 treatments. The low-dose protocol, the one that I created a thread for, is 100 mg X 4 treatments.

Well got some good news and some bad!

Good news! Plateletes 243 I think he said!

Bad news! Stopped Rituxan shortly after it was started and will not be doing the 4th dose. I was only about 1/2 hour into treatment when the Paresthesia started up again. Started with the prickly pins and needle than with in minutes it was up my entire left side and my right hand and foot were starting.

Panic started to set in I called the nurse over and said you need to stop the drip and run just the saline. I explained about getting the paresthesia after the last treatment and how I was already getting it. Told her I did not want to take the chance it would be permanent. So we ran a slow saline till the doctor came to see me.

He said I knew what was best for me and than offered Lorazepam since the tylenol didn't work last time. So I now have bottle of Lorazepam 1mg tabs I can take every twelve hours.

Rob - I looked today my dosage was the (375mg/m2) my dosage was 600mgs so I received just over 1200mgs in 3 doses.

On a side note doctor denies know about a note to send to the dentist. So now I have no idea what to do and hoping the dentist will call back with an appointment for a dental surgeon!

Wow, sorry you had to stop the treatment. But maybe the amount you already had will keep you in remission for a long time. Did the parethesia subside now, or are you still having them?

Sometimes lorazepam helps decrease the parethesias for me. A hot shower and rubbing my skin with a soft brush helps sometimes too.

dru - The only way I can describe it is it comes in waves. Gets really bad than settles down to still here but I can handle it. Than like a wave it comes back with a vengeance!

Julia, that is great that your platelets are up, but it must be frustrating not to know whether the Rituxan is doing it or the IVIG. I seriously doubt that more than the 2 X 600 mg of Rituxan would make any significant difference, since 4 X 100 mg has proven effective.

One slight disadvantage to Ellen's low-dose protocol is that it has a slower speed of response. Also, since she is getting the high dose dexamethasone, it will be quite some time before she knows if the Rituxan is working.