Rituxan

Hi!

I am starting my first treatment of Rituxan on Friday. Just wondering what to expect about how Im going to feel, what I should bring with me, stuff like that!! They said that we will be there for 8 hours and to bring food, what kind of food? Will I want to eat normal or am I going to want like soup or nothing? Any tips would be appreciated!!!

Thanks Julie

Julie - the only thing I thought to take with me was a book. As it turned out, I slept through the entire infusion because of the pre-meds. When I was awake, I just stared at the same page and read the same sentence over and over. I guess you could take anything you wanted to eat. I wasn't nauseous and would have eaten if I could have stayed awake. I didn't give food a thought.

I was tired when I got home, but was able to stay awake and watch TV. The next day I went to work as usual.

Others may have a different experience. That was mine.

Hi Julie,
Bring food that doesn't have much odor as you may be around others who are having treatments that upset their stomachs. I brought things like a banana, sandwich, etc. I wanted to eat like normal.
Erica

Just had my first Rituxin treatment yesterday. First of all, today I feel great. Yesterday morning, not so much but I was told that I could expect that.

I got pumped up with 50 mgs of Benadryl and when my eyes were rolling to the back of my head, the nurse told me that she was going to start the Rituxin drip and that I should let her know if my breathing became shallow or my throat was feeling as if it were closing. I thought well how am I going to do this if I'm passed out on Benadryl! It was a pretty funny scenario attempting to stay awake. Of course, all I could concentrate on was my breathing.

All was good until they increased the rate of the drip. I had an immediate reaction. Chills, nausea, vomiting. Ok...don't be afraid because it ends well. After starting and stopping a few times, it was decided that I just needed to take it slowly. It took 9 hours but I felt nothing once we determined the slower rate was best. One thing I wish I knew when I was having some reaction, I thought omg this is going to be a very long and awful day. Well as soon as they stopped the drip, I felt fine. I do hope that you don't have any adverse effects, but if you do, keep in mind it can be very temporary.

I would recommend that you dress in layers, bring extra socks just in case you have some reaction and get chilled. Perhaps an ipod because I agree with Sandi, reading is difficult. As far as food goes, I'm a very healthy eater, thanks in part to prednisone, but I didn't give it a thought yesterday. Came home and had a piece of toast, went to bed a few hours later and woke up feeling great.

Good luck to you. I hope all goes well. I am quite relieved that my first treatment is behind me.

Thanks everyone all great tips!! Another question that came up, my sister heard from someone that you have to be in isolation or at least in a super clean environment and away from kids after you have the treatment, have any of you heard of that?

My four treatments were very easy to do. The first day was about 3 hours and the next 3 were 90 minutes. I had no side effects that I can remember. I didn't take any food, a large bottle of ice water. They fed me lunch if I was there long enough. I took a puzzle book and a reading book and had no problem doing either. But one of the nurses that was doing the infusion has a horse, so I spent most of the time talking to her about her him.

Just remember, everyone is different in their reactions to treatments. Good luck and I wish you lots of platelets!

Hi Julie,

I also had a very smooth treatment back in October-November (and it seems to have worked, which is great).

I did a lot of knitting and read magazines and brought a sandwich and fruit for snacks. I felt a little achy after the first treatment -- like I was getting ready to get the flu -- but was fine after. The IV benadryl really makes me loopy but I could manage to knit.

As for the isolation/children question: I have three small children who are your typical germ factories. I had not heard anything about staying away from them, but wouldn't have been able to in any event. I haven't had so much as a cold this winter. I did have a flu shot before the treatment, though.

Good luck!
Sarah

Julie - no, I did not hear anything about staying away from kids (have 3 myself) or anyone else for that matter. I've never read that it is a precaution, and I've read a lot about Rituxan. I just did my normal thing and was fine.

Rituxan is not chemo and does not destroy cells like chemo does. It only targets B cells and T cells which are a small part of the immune system.

About germs and whatnot. Rituxan kills off part of your immune system so that your immune system stops killing your platelets. I was only warned to not get the live (nasal) flu shot for a period of time. I would listen to your doctor and her or his warnings for sure though. In my personal experience I had no problems with illness and did not have any restrictions. I even worked at a gas station coming in contact with people continuously. Good luck with everything!

I didn't get more sick after Rituxan. I was kind of surprised, I expected to be more vulnerable to catching stuff - but I was actually less sick - not a single cold. Coincidence probably.
Erica

Im currently recieving my Rituxin! After hour one im feeling nothing different!! Im going to try and sleep. Thanks for all the advice, hope the rest of the day stays this smoooth!

I hope it is ok to post on this thread. 3 weeks ago my platelets dropped down to 20,000 after being in the mid 30,000 for 20+ years. I got started on Prednisone, 40 mg and they came up 40,000 in 5 days. Dropped down to 20 mg Prednisone and today they are down by only 3,000. So. Now hem wants me to undergo Rituxan infusion, starting next Friday. My insurance is out at the end of the month, so I would get 2 infusions. But, I am scared to death after reading the side effects, especially the death in the first 24 hours.

dcurtis,

Im sorry to say that the Rituxin didnt work for me. I had a reactio to it and am now inpatient for observation. They stopped the meds right away when I started having a problem so I think im going to be ok, fingers crossed! Good luck to you!

dcurtis:

Death due to Rituxan is very rare. The cases where people died were due to tumor lysis in cancer patients, which is a totally different thing. Most people who have those scary side effects have other health issues which help to create the complications.

Julie:

Sorry you had a reaction. What happened? Most reactions can be controlled and the infusions usually resume. Glad you're okay.

Thanks Julie and Sandi for replying.

I am so sorry to hear you had a reaction, Julie. I hope everything will be fine for you!

Sandi,

I understand that the death is rare, but it is still scary to think about. I am 47 and no where near ready to go! I also am worried about this JC (I think that is right?) gene that a person can have and be dormant and the Rituxan can cause the PML? Am I overthinking this stuff, or should I be worried? This is all new to me, as I have never been treated for ITP all these years. My platelets have maintained in the 30,000 and my hem has been fine with it. They are 58,000 now and honestly I am happy with that!

I guess I have a choice now between Prednisone and Rituxan.

dcurtis,
58 is a pretty safe count! Maybe you need a different hemotologist rather than Rituxan. Are you bleeding or having other health problems? Most people here would not treat at that count.
Erica

dcurtis - Rituxan is nothing to take lightly and yes, PML is a concern. I am glad it wasn't a known issue when I had Rituxan. However, it is rare. Very rare. If you are a person who is not concerned with living with counts in the 30's, you could think about other options. Have you ever tried Win-Rho? What about Decadron?

Hi Erica. No, I am not having any issues at all! I normally bruise easily, but I have noticed since being on Prednisone that my bruises go away a lot quicker, and sometimes I don't bruise at all! I was just at my normal every 6 month check-up (3 weeks ago today) when my platelets had dropped. I thought it may be due to having 2 periods in the month of January, as well as the Pravastatin. Hem told me to stop Pravastatin, and start on Prednisone, as he did not like the 20,000 number. I guess his fear is that since they did drop to 20,000 for apparently no reason, then they could do that again and no one would know? I actually saw his partner last week, as he was out of town, and when I talked to her, she thought I would be able to stop the Prednisone today!

Sandi, I have never tried anything else, other than the Prednisone. I was thrilled with platelet count at 61,000 and I am still thrilled at 58,000! Maybe I should just stick with the Prednisone for now. I am on 20 mg still. I still need to research long term effect from Prednisone, as the only thing I know of at present is the "moon face".

I really appreciate being about to talk to you all. It is so surreal to be treated for this now, after living with it for over 20 years and never needing anything!

20 mg's is a pretty medium-low dose. It could help you maintain for a while until you make a decision. If the side effects are not driving you crazy, just hang in for a while.

I had an ananphlactic reation, not sure how to spell that but I couldnt breath. They stoped the Rituxan and gave me an epi pen right away. Dcurtis I have had every problem with Prednisone you could imagine!!! Im not sure whats next for me as in treatment but I NEED to get off the Prednisone! My count this morning was at 131,000 not sure what we are doing as that doesnt seem to be a bad thing!! Im a little frustrated that the Rituxan didnt work! Sorry to vent, Im not a big fan of hospitals and i know I need to sleep but I just cant!!! I wish I was home in my own bed!!

131 is a great count. I'm surprised they went ahead with Rituxan. Hmmm. I hope you get to go home soon.

Did you get pre-meds?

Julie so sorry to hear about your reaction and I hope you are ok. I'd be interested to hear what your next steps will be. Please keep us posted.

Dcurtis, it took me about a month of talking to others who received rituxin and getting pretty fed up of being on prednisone to welcome the rituxin treatment as an option. I agree it is frightening to read all of the warnings. A friend of mine who works with aids patients who participate in drug studies advised me that even if there is only one person who experiences adverse side effects it must be reported. I did some research to learn that the fatalities related to rituxin were for people who were not being treated for itp only. I would recommend that you do some research so you can see the numbers and circumstances in which the real adverse effects occured in order to make a decision that is right for you. I get it though. Reading about the effects can be overwhelming. It was for me. It is definitely scary but between rituxin and prednisone, rituxin was worth the risk for me hands down.

I will have my second rituxin infusion on Monday. Good luck in your decision.

Julie, I think 131,000 is a great count. I will be interested in hearing what the next step for you will be. Hope you get to go home to your own bed soon!

Kas, what are your platelets like after your 1st Rituxan? Thanks for sharing, and you are right, it is very overwhelming right now.

Question. Not sure anyone will know, but all opinions are definitely welcome! To top all of this stuff off, my husband has lost his job and my insurance will be out at the end of this month. So, I will only be able to get 2 infusions of Rituxan, and then I won't have any more insurance. Would 2 infusions be enough to put me in remission? What are the odds of going on remission versus not working?

If anyone has any sites to send me to for some research, I would appreciate it. What bothers me a lot is that I felt all of this was so rushed. I am sure my insurance running out at the end of the month played a role in that. However, when my hems PA talked to me, she first told me "This is a 1 time dose and then you will be done with all of this", and "there are no side effects". I was only told this is an antibody, and that was pretty much it. Well, when I came home to look this stuff up, I find out that there are side effects and they are scary.

Regarding number of infusions of Rituxan - I got a remission of so far almost three years from 2 infusions, Sandi got a remission of like 7 years so far from one infusion. In both those cases though, it was our second time using Rituxan. There is some research to suggest that one or two infusions could be totally enough - the four regimen comes from cancer treatments and isn't validated for ITP. In fact, I was wondering Julie how much Rituxan they got into you before your reaction, it might be enough to work??
Erica

Two infusions could put you into remission if you are responsive. Recent studies have shown that the full four infusions are not needed for ITP. Lower doses, or less infusions, can be just as effective.

www.haematologica.org/cgi/content/full/93/6/930

I can't believe a PA would tell you that. Those statements are so full of misinformation. "You'll be done with all this"? "No side effects"? Don't we all wish!

Kas - don't feel secure that all adverse reactions are reported. They are not. I had serum sickness from Rituxan and asked my doctor if he reported it. He did not. I did. I'm not sure it was counted since it didn't come from a health care professional. There are also patients whose side effects are not properly diagnosed as related to the drug. I'm sure there are also people who do not mention certain side effects to their doctors. Many, many adverse reactions go unreported.

Exactly, Sandi. That is one of the things that is bothering me greatly about this. I can't understand how she could tell me that, and then reading what I have so far? Doesn't make any sense.

Thanks for the link on the dosage/infusions. I am off to check it out.

eklein wrote: In fact, I was wondering Julie how much Rituxan they got into you before your reaction, it might be enough to work??
Erica

I was wondering the same thing.

Im not sure how much I actually got. My mom said she thought I got 7 ccs. I was on the drip for the first hour with no problems and then she turned it up so it went faster and thats when it happened. I havent seen my hemo today and im not sure if I will see her before I go home. I was wondering why we were doing the Rituxan when my count wasnt that low, but I am having bad effects from Prednisone and need to get off it. My count however hasnt been lower then 40,000 since December.

So you only had the first hour's worth at a slow drip rate. I'm sure there is no research on tiny doses of Rituxan - I hope you make medical news and get a boost from it!
Erica

Yeah I had a very little bit. Im wondering if its safe to try again or not? Since I was fine for the first hour at the slow rate maybe I can do it just slow? I dont know. They did give me benadryl and tylenol orally before the treatment. And then when I was having the difficulty breathing they gave me more benadryl thru the iv. They also gave me some other steriod and the epi injection. My Hemo was there when they were getting me ready to go to the er and I asked her what the plan was and she said we will worry about it later. So I m not really sure whats next! The thing is my count is at 130,000 but Im still on 90mg Prednisone daily. I was tapering and then my count dropped, but it only dropped to 57,000. But she put me back up on the Prednisone. I have an appointment with an endocrinologist to discuss getting off the Prednisone, in the mean time my i have no clue whats going on. My face is so swollen its not funny!! I would take a picture but its so embarassing! My legs and arms and back are severely weak. Im an overweight person as is and I have gained 30 pounds since i have been diagnosed!!! I need something to work! How do you all feel about spleenectemy? Is it worth it? I know Im rambling just a little frustrated!!