What to expect with Rituxin????

My Hema recomended I try Rituxin. Just curious what to expect after the treatments. I know the first is the longest. He told me about 5 to 6 hours. He also suggested Promacta and Nplate. But after all the things I have heard and read, Rituxin has the highest rate of getting a longer remission. Kind of nervous, but also looking forward to getting off the Pred!!! Any advice would be greatly appreciated

I thought the actual infusions were a breeze. They usually give Benedryl to ward off reactions, so I pretty much slept through it. I did take a book but stared at the same word for three hours. I was fine for work the next day.

Some people have slight reactions such as trouble breathing or problems with blood pressure, but they monitor very closely and if a reaction begins, they slow the drip and deal with it quickly. Once you get through the first infusion, the chance of a reaction the next time decreased.

Yep. I agree with Sandi. I had Rituximab (the same thing) 2 weeks ago. It went really well. I did sleep through most of it too. But the next few days felt like I had the flu or something. And I can't wait to get off Pred too!!! I'm still waiting for that!

Hope it goes well...

Jules

It amazes me how much the treatments are different from one hemo to another. I was pretty much off prednisone before I started the Rituxan. I finished my rituxan treatments in December and am holding my count in the 170-190 area since then. My first treatment took almost two days, I reacted badly initially (hives and fever) and they had to stop the drip several times. Now they didn't get started until 11am the first day, and stopped at 6pm, came back the next morning and finished the remainder before noon. Then they had the system down benedryl, tylenol, check blood pressure every hour start the infusion at 50 increase every hour until 200. I slept most of the time. Liberty, Robin, and the rest of the nursing staff did a wonderful job of looking out for me especially that first long day. Not one of my treatments lasted less than 6 hours, but they had me see the doctor before they started treatment so most were about 5 hours. I'm happy with the results so far. Glad to be off Prednisone, have blood work once a month now and doctors appointment every three months. Yeah...

I posted on this subject on another thread, but i am supposed to start Rituxin tuesday and am really nervous about it. Things are just moving too fast. My counts are at 71,000...and still dropping, on 70 mg of prednisone.
They were 186,000 over 2 wks ago...on 80 mg of prednisone, then dropped to 127,000 in 6 days then down to 108,000 and yesterday at 71,000..they are dropping fast.....

I am nervous about this Rituxin though. Isnt it like a chemo?

No, it's not chemo. It's considered immunotherapy, not chemotherapy. The difference being that it only targets certain B cells, whereas chemo destroys many other cells as well.

thanks that makes me feel a little better.'

I need a little bit more of an education....on this stuff. My counts were 71,000 Friday, on 70 mg of prednisone........and had dropped significantly in past couple weeks, after being up to 186,000. My doc wants to start me on rituxin, Tuesday. I am nervous about it...and since prednisone is the only thing i have been on, and my counts at diagnosis were at 35,000...I just dont know what to think.........so i think i will read more and get a second opinion.

I am awaiting a call from Shands for a possible appt for a second opinion.......but i probably wont get the call until tomorrow.

I am cancelling the rituxin administration for tomorrow until i learn more .
Thanks to all of you for all of your comments, encouragement and help.

That's what we're her for Denise! Sending prayers your way for peace and an appointment soon!

Just an update on my Rituxin. I am going for my third on Thursday this week. I started on March 19 and my counts were 22k the next week (3/26) they were 123k!! Is this normal to see a response so soon?? I was really expecting them to be around 20, and I was shocked to see 123. Don't get me wrong, I am very happy!! I am kind of nervous to see what they are on Thursday.

Nisse,
That's great! Awesome! Good for you! Mine rose quickly too and stayed high! (knock on wood). I'm so happy for you!

Natalie

This is my treatment

22/7/09 platelets 30
28/7/09 1st Rituximab overnight in Hospital (Bad reaction infusion stopped)
29/7/09 Platelets 40 done at hospital
4/8/09 2nd Rituximab overnight in Hospital
4/8/09 platelets 42 on ward
8/8/09 RPH Ultrasound on Heart
11/8/09 3rd Rituximab overnight in Hospital
11/8/09 platelets 53 on ward
18/8/09 4th Rituximab overnight in Hospital
18/8/09 platelets 43 on ward

2nd try
12/2/10 Day patient for 3 bottles of ivig
18/2/10 platelets 196 at home
24/2/10 1st Rituximab max dose overnight in Hospital (Bad reaction, infusion slowed)
25/2/10 Platelets 111 at hospital
3/3/10 platelets 79 at home
4/3/10 2nd Rituximab max dose overnight in Hospital
11/3/10 platelets 39 at hospital
11/3/10 3rd Rituximab max dose overnight in Hospital
12/3/10 platelets 35 at hospital
18/3/10 platelets 39 at hospital
18/3/10 4th Rituximab max dose overnight in Hospital
19/3/10 platelets 43 at hospital
23/3/10 platelets 35

Living in hope that this time it works.

that's excellent!!!!! maybe you get to keep all of them!!!!!!!

Rituxan can sound so scary. I was definitely scared. The part the killed me was knowing that I had to rely on a chemical to get me back to "normal." But, I think we need to at it from another perspective: aren't we lucky that we at least get the choice? I guess it's easy for me to see it as this since it worked so GREAT for me. All I can do is tell my story to try and put all of your minds at ease. I had four infusions over four weeks. They each lasted 5-7 hours. The nurses will check on your constantly throughout your treatments. They will take your temperature, monitor your iv, and give you more tylenol when needed. It is normal to run a low grade fever during the treatments. Before you start treatment, they will give you tylenol to lower any fever you may develop. They will also start a benadryl drip in case any allergic reactions arise. When the benadryl is finished, they will start the rituxan. If it is your first infusion, it will be extremely slow. Some people have experienced mild burning at the injections site or an itching sensation. I experienced nothing. It may as well have been water going through that iv! Thanks to the benedryl, I was knocked out. I love to sleep anyway...so this was fine with me! The nurses and doctors will tell you to alert them if your breathing feels funny or if you feel sick. Be reminded that the infusion can be stopped at anytime. Also note that the first infusion takes A LONG TIME. Mine took 7 hours or so. Luckily for me, I was in a private room with a tv, so I watched tv, slept, and then had my dad running to get me food all through the infusion (thanks prednisone!) Yes, it's true, I ate, slept, watched tv, and read magazines. Now, come on...that can't sound that bad, right? Make sure someone goes with you because you will be drowsy after! The infusions took all my energy. I think the process and the benadryl will take it out of you! But, I was good as new the next day and went to work. I'm a kindergarten teacher, so that should tell you that my energy was regained! I repeated this once for four weeks and I have been a year in remission. I know that rituxan unfortunately doesn't work for some people, but research shows that is improving with time and successful remission rates have risen! If any one has any specific questions, don't hesitate to post or emai me! Good luck to all of you!

Natalie

And sorry for all the terrible typos!

Natalie

Nisse: No black and white answers to your inquiry. Rituxan was originally developed to treat non Hodgens Lymphoma (NHL) There is a lot of data on that treatment. But Rituxan is sorta used 'off lable' to treat ITP. There is no published data from the manufacturer as to what to expect. You can only make inferences from the NHL data and try to relate it to ITP. One thing I've experienced is that the effect of the Rituxan may take weeks to months to become effective. As related to NHL, the mfg'r list the onset time at a median of 50 days. Prednisone can be used to keep the count up till the Rituxan kicks in. Lotsaluck...........

Today They were 180K!! Yippee!! Nice to be in the "normal" range for a little bit

:woohoo: :laugh: :woohoo:

Great! :woohoo:

My hemo was really wanting me to do Rituxin a year ago. I read and searched and read some more about it. Long story short I did not take it. I did the Promacta took 8 doses of it and I'm still in a nice remission drug free. I would really do your research of Rituxin. It's a very personal choice just be sure it's a well educated one. Best wishes to you.


Opps I didn't see the 2nd page of the posts..Duah! Sorry new to this layout.

Has anyone discussed or looked into the combination of rtuxan and Dexamethase (Decadron)? This was recommended to my daughter and we are wondering whether to do it. She has had ITP since 12/09 and is 14. Winro twice due to low counts. Seems to atablize in the 50,000 range. Any feedback would be welcome. The combination is thought to do a better job at putting the patient into remission.

My daughter Caitlin had the standard four doses of Rituxan one week apart in Sept.-Oct. 2002, after a year of ITP; she was 15 years old. IVIg and WinRho didn't do much for her, but Dex pulses took her to the low 100's; she dropped by about half each week til she'd get to retreatment levels of about 20-25K. But the Dex side effects got to be too much after about ten months, and we looked for something else. Going without treatment seemed pretty scary, because Caitlin's intro to ITP landed her in the hospital as a result of a menstrual cycle run amok. There weren't as many options then, and we really wanted her to keep her spleen. A second-opinion doc mentioned Rituxan, we mentioned it to her regular hemo--and a few weeks later, she started the infusions. She was not on any study, and our insurance covered it, no problems.

Caitlin says she felt like a guinea pig, and she was one of the earlier kids to receive it--there had been a few others, and that guided our hopes. No, it doesn't work for everyone, but when it does----! She received each infusion very slowly--took all day every time. No problems noted on doses one and two, but her lower leg bones felt achey after doses three and four. And she developed a mild case of pneumonia between doses two and three--it was going around at school. She was given antibiotics, and stayed on-schedule for her next dose. Her counts rose very early-she started below 33K, had 132K a week later, after receiving dose two. Was at 171K when she developed the pneumonia, at 136K a week later, and had dropped to 103K after dose four. That was Oct. 18; she hung around there for a month, but had risen to 225K by November 26, 2002---and has remained at about that level (her highest was 292K) on every CBC since that time, seven years, nine months ago!

Why has she responded so well? Wish we knew. While she did not continue on the dex pulses after starting Rituxan, she had had a pulse the month before. I'm sure it took the dex some time to get out of her system; there was likely only some residual level but--who knows? We offered them the option of a few extra vials of blood--they didn't think it would be helpful. She was released by the hemo after the four year check, I think. She's 23 now and knows what to watch for.

I have been posting from the beginning of her Rituxan remission, and read and print off everything I can find about it. Those who hit 100K usually get a year or more of remission; some folks who don't get the high counts do get a break from other treatments for a fairly long time. Other folks, it hardly seems to help at all. The other thing is, if you've had a splenectomy, the first few months after Rituxan should be an prudent exercise in germ avoidance. I've seen people of all ages report on their Rituxan experiences--it's worked only occasionally for young babies, so far as I can tell, but works for about half from pre-teen years and up. We are still waiting for more results on kids to be published, but there's a fair amount of research out there on Rituxan, if you look.

Rituxan has side effects that were rarely reported in 2002--namely PML and serum sickness. Don't know that knowing about about them would have changed our decision. Caitlin felt so vulnerable health-wise just when she was coming into her own; she was becoming a hypochondriac and was avidly plucking leg hair with tweezers. ITP affected her head greatly. It also limited her in the activities that had long been part of her life--horseback riding, Girl Scouting (they went white water rafting, rock-climbing). And she was due to start driving...and wanted to work with fanged creatures (wolves, primarily). We felt it would be great to give her a chance at a year without worries!

Of course, we are nothing but pleased, and sing the praises of Rituxan every chance we get--but it is a big decision. Still, if offered the chance I'd grab it NOW, before Obamacare hits! Because its use for ITP IS off-label, and it IS expensive and it doesn't work for everyone, I don't think you'll be seeing as much of it soon...

Good luck to each and every Rituxanite! To infinity and beyond with those platelets! Ann, Caitlin's (23) Mom

Thank you for the feedback - Caitlin ahs been very lucky. What is PML and serum sickness you refer to? We were hoping our daughter would get better on her own. But it sounds like this combiation treatment works better the sooner you get it after being diagnosed. If we do it it would be this August before she is back in school. This is so scary. I am so afraid of making her worse.

I had rituxin 2 years ago, was in remission until recently. Treatments went well for me, one a week for 4 weeks, did not see any increace in platlet count until after 3rd treatment. I think it works well and has almost no side effects, after first treament I felt tired and did have the flu like symptoms but the rest of the treaments I did not experience anything. I was scared about the treatment but was lucky enough to do it because it did give me a little over 2 years of a normal life.

Would you do rituxan/dexmathasone combination or try promacta? Dr just gave us an option bet the two for my 14yr old.

Would you do rituxan/dexmathasone combination or try promacta?

I take Promacta now. It seems to keep me between 30k -50k. For me, Promacta has far fewer side-effects than any of the other treatments I've been on over the years.
I don't like infusions and I would not wish Dexamethasone (in any dosage) on my worst enemy.

What is the issue with dexamethasone?

It's a very harsh steroid with nasty side effects. It's hard to tolerate.

Sandi wrote:

It's a very harsh steroid with nasty side effects. It's hard to tolerate.

AMEN!
"It's hard to tolerate" for both the patient and everyone around the patient!
It feels like a 'steroid on steroids'...... :woohoo:
Not something you want to take in large doses for very long.

Although, it has been quite handy over the years as a quick platelet count boost whenever other meds have stopped working for me and I dropped below 5k. That is the only nice thing I have to say about Dextramethasone....
No wait....it's also very inexpensive....so okay, 2 nice things.

I have a family member who was diagnosed last year with itp Steroids worked for a short time. The doctor is starting rituxin in two weeks. She is angry and depressed by this. I worry for the person. What advice do you have to help a family member through the treatment. I told them of the positive response many of you had but I was told that they don't want to talk about it. Any help?? I just pray the rituxin works with no side effects.