Rituxan side effects after treatment

Hi, this is my first post here and I was hoping for some advice with Rituxan.
I am a 22 year old female and was diagnosed with ITP about a month ago. I started with prednisone, which didn't work. Yesterday I received my first round of Rituxan. During treatment I had a small reaction, but with more benadryl, was able to continue. After getting home I felt very achy and had a fever for the whole night. I couldn't sleep much, and this morning wasn't feeling much better. I took some Tylenol which helped with the fever. I was wondering if anyone else had similar experiences, and if this is something I should expect for the following treatments?

Thanks
Joelle

Hi Joelle,

I had 4 Rituxan infusions during the month of October 2013. I had each infusion first thing in the morning and did fine during (no reactions). But, later in the evening, I developed a headache and low grade fever (nothing higher than 100.4). My fever usually subsided by the next day and I took Tylenol for the headache. This happened after each infusion.

If you are concerned about your symptoms (or they aren't any better), I would call your doctor and let him/her know.

Take care,
~Lauren

Bummer the Rituxan is giving you trouble. I had 4 infusions a month ago and no reactions. I was very fatigued and sleepy for the next couple days but no fever. I was advised by the hospital to contact if I get any fever. So I'd recommend that to you as well. I hope the side effects go away soon. Feel better.

If you still have a fever and arent feeling well you should call your hematologist. Better to get it checked out.

How are things going?

Thanks everyone for the replies!
I did end up calling my doctor and she said that it wasn't uncommon to have these side effects after treatment for the next day or so. I am feeling a lot better this afternoon, and hopefully will be able to sleep tonight! I swear between this and the prednisone I haven't had a good night sleep in awhile.
I am nervous this will continue for the next treatments, it seems like that is what happened with you Lauren? But it also seems common that there are only side effects for the first day? I guess I will just have to wait and see, it seems like everyones experiences are different.

Just because you react to treatment doesn't mean you will too all. That said you are feeling better so if you react to the second one than you will be able to tell yourself it will go away just takes a bit of time!


Here's hoping your side effects are minimal and your response great!

Hi Joelle,

Yes, I had the headache and low grade fever after each infusion. This may not happen to you. My doctor initially told that it could happen again or it may not. Just depends on how the body reacts to the Rituxan. It just so happened that I got the symptoms after each infusion. It wasn't overly bothersome since the fever and headache were gone by the next morning.

Like Winnifred said, at least if it does happen again, you know it is not something to worry about and it will go away in time.

I hope you get a great response from Rituxan - my counts have been stable since January, hanging out in the 120s.

~Lauren

I'm so glad I didn't use Rituxan. I just had an appointment with the immunologist who told me that my CD8 T Cells are so low as to be almost non existant. Why don't they check for this before giving these drugs? If it was me now, I'd ask to be tested first.

I'm not sure what CD8 T cells are.. I will be sure to ask next week when I go in for my second round. What have you used to treat with instead?

T cells are white blood cells, we have T cells and B cells. Rituxan wipes out the B cells. I have very low T cells so if I used Rituxan I'd have had no important white cells at all. It's not routine to check for that sort of thing probably because it's more of an immunologist's area than a haematologist's and doctors are not good at thinking outside their specialty.

I used Nplate which has put me into remission. My last count in December was 195.

Is the low CD8 count a side effect of ITP treatment that others should know about?

I don't believe so. Ann has problems with white cells independent from ITP.

No, it's all part of a primary immune disorder, one of the effects of which is often ITP. So the ITP came from that and not that from the ITP. I have low immunoglobulins (antibodies) and low T cells. I'm on daily antibiotics now, one of the brilliant but unexpected results of which has been the complete resolution of the reflux that I've had for ten or so years. So it's not all bad.

Which antibiotic is it, Ann? I've had reflux for many years too and it just gets worse as time goes on. Too much NSAID and Prednisone use.

Septrin (co-trimoxazole). I just take 480mg a day. I had a rash from Septrin at full dose some years ago but haven't had a recurrence this time. You could try Trimethoprim on its own without the sulfa part if you're allergic or try something else. It did take several weeks before the reflux went and it may of course come back if I stopped but luckly I don't have to stop.

There's a theory that reflux is often caused by overgrowth of bacteria so if that theory is to be believed then it does make sense. The theory continues that the overgrowth is permitted because there's too little acid in the stomach. So taking hydrochloric acid tablets might also help. It's counterintuitive as we are usually told to take antacids. I don't know if this is all quack theory but still..

It's wonderful to be free of reflux. I think if I'd had to choose, I'd rather have got rid of that than the ITP because it caused me much more daily misery!

Ann,

I've have so much reflux, stomach problems, acid daily and am miserable. Haven't found a doctor who can resolve the issue. Would love to be free of reflux.

Thanks for your info.

I have been on antibiotics a lot the past few years and none have helped with reflux. Of course I may not have taken the right one. I should really get more serious with probiotics. I go in spurts with those. Haven't taken them for a while now. The acid in the throat thing is so vile; happens when I bend over. I noticed that it stopped when I quit eating gluten, that was one benefit of that.

Hello everyone!!! Hope all is well with everyone.

Hey I am 29 yrs old and I have just started my Rituxan treatment a week ago. Now I have to say that i have been diagnosed with ITP since May 2013. The doctor told me that I will have to do 4 treatments of Rituxan. The doctor said that i will have a treatment every week. I can say that I have been very tired and sleeping a lot after my first treatment, like I was in the bed for about 3 days, barely ate anything, and have a headache as well. I have my days that i am feeling very weak and tired. Now i am about to have my second treatment and i am barely got the strength from the first treatment. As i was reading you all statements under this topic, i have some questions to ask everyone; How often did you all have to do the treatment, like did you all have a treatment every week, bi-weekly, or once a month? I would like to ask you all did these treatments affect your job? Were you missing days from work because the side effects of the treatment?

Please let me know?

Hi John, welcome!

I did Rituxan in 2010, (I think, I can't remember!) and had no issues. My husband took the day after my first treatment off to be with me in case I needed him, but everything went well and I had no issues with any of the treatments. But everyone reacts differently, so I'm sure you'll get more replies.

Hi john,

I just completed my rituxan treatments a few weeks ago. I had 4 treatments as well, 1 each week. I think that is the normal approach. After my treatments I was tired and often took a nap, but felt completely fine after that. I was probably tired do to the Benadryl. My appetite was also normal as well. The only complication I had was flu like symptoms and a fever the first night (although uncommon, this is a known reaction). After the first treatment, I didn't have any other problems. I had to miss classes on the days I did treatment, but only because it took 3-6 hours and needed to be scheduled in the morning.

I would talk to your doctor about the loss of appetite and how tired you are , from what I know, rituxan shouldn't have those side effects.
Good luck, I hope it works!
Joelle

John:

Four weekly treatments is the standard and most of us have had Rituxan that way. I had to miss work the day of the infusion, but was fine for work the following day. I was tired after the infusion due to pre-meds. but actually felt great the following day, probably due to Solumedrol being an anti-inflammatory.

You should speak to your doctor. I haven't heard anyone complain of being tired like that for days afterwards. Did you recently taper off of Prednisone by any chance?

Hi John,

I agree with Joelle and Sandi - you should report your symptoms to your doctor. I had the four weekly Rituxan infusions back in October. As I mentioned in a previous post, I had a low grade fever and headache after each infusion, but both subsided by the next day. I did not experience any loss of appetite or extreme sleepiness as you have. I was a bit drowsy immediately following the infusion, but that was from the pre-meds (Benadryl) that I was given. I also missed work the day of the infusions, but was fine to return the next day.

Hope you are feeling better soon!

~Lauren

Hi have just had my 4th treatment of rituximab today feeling fine so far had pried meds first with each treatment so really sleepy after hoping iit works my count went from 5x to 77 next week backdown to 7 this week back up to 12 so will see next weeks result also on 20 mg prednisone I think with ITP you just have to keep trying

I started my Rituxan treatments March 7, 2013. No immediate reactions at all and I was very hopeful. Platelets increased substantially the first week, then dropped 50% after the second treatment and again 50% after the third. By that time I was sleeping 16 hours a day and only leaving the house to be tested. Never had the 4th treatment because my kidneys reacted and I was admitted to the hospital with dehydration. Sooooo....back on the Prednisone after being off for 4 weeks (been on it for 3 years since I was diagnosed in February of 2011.

Willa530, what else have you tried? It isn't a good idea to be on pred for so long. I wonder if the sleepiness was caused by coming off the pred. What are your counts like?

Willa, my son was like you - platelets went up to about 70 be the 2nd dose, down to about 50 by the 3rd, and 30 by the 4th. He was also excessively tired for those 4 weeks. The dr said that the steriod (?) they gave him for pre-medication was responsible for both the rise and the tiredness

Yes, I thought that may be the case.