Rituxan users

Hello

If you have done Rituxan, did other treatments before that work? IVIG, Steriods, Winrho? I know alot of people do RItuxan to try to get a longer remission. My son is refactory to everything else, so I am afraid to try such a harsh drug if he is only going to be refactory to that also. Yes I know everyone is different, so I can't predict it all on nothing else working. Just curious to see how many people had success with Rituxan after being refactory.

Thanks

I've done prednisone, IVIG, Winrho, Chemo, and Rituxan. All of the drugs worked for me it was the side effects I couldn't handle. I am not refractory I just refuse to take drugs that make me feel worse than ITP.

That said Winrho and Rituxan had the least side effects for me. I do not know how Rituxan would effect a child.

Prednisone and Rituxan worked for me. Win-Rho and Danazol did not.

I do have a suggestion. You could try lower dose Rituxan or just do one or two infusions instead of four. Studies show that can work just as well and you wouldn't be bombarding him with too much.

Sandi I was thinking the same thing!! If I can bring myself to try it, I was gonna ask the Dr. about that

So far, I have taken Prednisone, pulses of dex, 4 rounds of Rituxan, and finally it's promacta that is working now.

I had no side effects from Rituxan.

1st round--3 months remission
2nd round--9 months remission
3rd round--3 months remission
4th round--didn't work (this is when I finally got my dr to let me try Promacta).

He won't let me try WinRho b/c of the blackbox warning.

Round? Meaning you only did one infusion and got those remissions? Or you did 4 infusions 4 times?

I did 4 infusions 4 times...

Thank you, they haven't suggested TPO's yet and when I mentioned them the subject got changed. I know they are new and not approved for children yet so I haven't pushed because I am unsure myself. Rituxan I believe isn't approved for ITP, and I know it hasn't been used on children as long though either...Just too much for me sometimes.

I love how good his Dr is at telling me everything, giving me options and suggestions and allowing me to do the decision making for my child, Yet I hate it..I am at the point I wish they would say Ok this is what we are going to do...

If you are talking about a child then yeah I would do more research as I don't know. As for adults you might as well try it. I put it off for about 8 months as I kept trying to find a dose of predinisone that would keep me above 50 but not be unlivable but finally just had my first dose of Rituxin last week with my next (of the two I'll be getting) to come in a week and a half. We'll see if it helps but getting it was no big deal at all. Worst part was actually the Benadryl they seem to give everyone there getting any infusion. That wiped me out all day.

Here is an interesting study on Rituxin I recently read that seemed to indicate that if you are refractory to steroids that Rituxin is less likely to work:

www.ncbi.nlm.nih.gov/pmc/articles/PMC2040174/

russp,

Thank you for the article. I learned a good deal from it. However, I did not find anything in the article regarding prednisone refractoriness as a predictor of Rituxan efficacy. The closest thing I could find seemed to say the opposite:

After a careful analysis, we did not find significant differences between the results obtained in the systematic review and our results in terms of the variables that may affect the time to response to rituximab, namely, age, sex, previous use of corticosteroids, number of treatments before rituximab, rituximab dose and schedule, period between diagnosis and rituximab administration, duration of ITP before rituximab, and pretreatment platelet counts.

Did I miss something?

Thanks!! ITPer's are such a comfort compared to Dr's..I trust his Dr's but they don't live with it, they give the treatments but don't receive them so it is so nice to hear personal experiences.

It is a child, only 3 years old..At this point no other treatment has worked so it is Rituxan or him continuing to live in single digits..As a mom neither one sounds nice, it is a terrifying time..

PML had me terrified, along with other side effects. So I looked up PML and found prednisone can even cause it, Now I am leaning a little more toward giving it a try..I am not suggesting because I put him at risk once means I am happy about doing it again, but because pred is his rescue treatment and he gets thrown on it often.

I also read that the fear of infection is very low unless on an immunnosuppressant.

Today is exactly 2 years since diagnosed..Last count 6k

You're allowed to have a mad face on his two year anniversary! Crystal, I can remember quite a few refractory children here (boys too) who seemed like they would never get past ITP. Most of them eventually did, the cost was a head of gray hair for the Moms. I sincerely hope your little boy ends up in that group sometime soon.

I think it must have been somewhere else I read that predisone failure meant less likely to respond to rRtuxan. Basically it seemed to say that if you don't respond to steroids that it was less likely you would to respond to Rituxan. Could be hogwash or just lack of data though so take it with a grain of salt.

Luckily for me after my first injection of Rituxan my count is up to 127! I'm getting my second today and then he said come back in a month at which point if its still up I can finally start weaning off Prednisone after a year on it. I've only been on 10 mg the past while (which keeps me at around 33k count) but still I want off of it. Hoping the Rituxan effect lasts a good while.

Wow, that is a nice response..Good luck, I hope it continues and you get a nice remission!!

crystal lee wrote: Wow, that is a nice response..Good luck, I hope it continues and you get a nice remission!!

Thanks. Don't know how likely it is to be long-lasting but at least it's a great start.

russp wrote:
Thanks. Don't know how likely it is to be long-lasting but at least it's a great start.

It doesn't matter how long lasting it is - you're allowed to enjoy every day of it.

I feel your son's refractory pain. Prednisone did nothing, the splenectomy did not work, I'm allergic to winRho and IVIg works about as long as an ice cream cone lasts outdoors in the middle of summer.

We were just about to give up hope that the Rituxan was going to work and on the 13th week post-4th injection my counts stabilized in the 80s.

That was last month. My next CBC is in seven days. Even if it only lasted a month, it has been the best month of my life post-diagnosis.

I'm sending good vibes to your son! Good luck!

Hey!
I was diagnosed with ITP with counts 17 in 2009! I went on the prednisone taper rollercoaster and responded well, but after the taper counts settled in the 30s! I went with Rituxan and immediately responded after the first infusion. (I was still on steroids, so those helped too). I did 4 rounds of Rituxan and sustained a nice, long 5 year remission with counts hovering in the high 200s! My counts just recently dropped back down to below 100 and I am monitoring with steroids again. Fun, fun...but this is the ITP rollercoaster as we all know! I had zero side effects with Rituxan and if I had to treat again, it would be my number one choice. I am, however 27 years old and was 22 when I had my first round of it! If you do go that route, keep us updated! Best of luck!

Russ, I found what you are saying right here on PDSA under treatments

Predicting Success

There have been few studies that give us clues about predicting the success of rituximab. In one study children who responded to steroids had a better response to rituximab.15 In another study, people with the FCGR3A V/V genetic type were more likely to respond to rituximab. Those who had very high levels of CD8 (proteins that work with T-cells) didn't respond despite a drop in anti-platelet antibodies

Thank you Kay and Natalie. It is so encouraging to hear good responses but it makes me so nervous with him being so young. Wish there was an easier answer.

Crystal,
I know how stressful it is on me, as a 27 year old adult. I can't imagine the stress it can wreak on a parent. I teach kindergarten, so I am constantly around children and I can't even imagine having to face some of these issues with such a young child. You sound like you are doing a great deal of research and you are definitely putting your son's best interest first. There are quite a few people on here who have treated with Rituxin and had great, great success. There are others who did not, but you just can't ignore the success stories. ITP is different for everyone, so finding what works is the hardest part. I can tell you, just in the six years that I have been a part of this wonderful discussion, the research and knowledge regarding this disease has expanded ten fold. Five years ago when I treated with Rituxin, there weren't too many of us on here who had used that treatment method. Fast forward five years later and there are QUITE a few who have tried and had wonderful, durable, long, remissions! When I started on the forum NPlate was the "new" drug that none of us really knew too much about. Now, it seems like there are so many ITPers that use it and love it! I am so happy to see the leaps and bounds that have been made in these 5 short years. I know that the research will continue and keep improving! For now, keep doing your homework. You are doing a good job! Whenever you need encouragment, don't hesitate to turn to this discussion board. It has brought me peace of mind on many, many an occasion! You are not alone and your son is not alone! Keep up the good work, Mama!

Called and talked with his hematologist today. First I asked why she hasn't suggested TPO's she feels they have only been out for about 5 years and not used much in children, so she isn't comfortable. I didn't disagree, I was just curious. So she still feels next step is Rituxan I did ask her if she has ever done a lower dose for ITP. She hasn't, said she always does 4 doses, over 4 weeks..I told her many studies show 1 or 2 work. She agreed she could look that up. His count is Wed, so I will call her than. She told me, I do the thinking, she does the reading..HAHA..I wake up in the middle of the night, can't sleep and look things up!! I feel like I will never have enough info, and I learn so much everyday!! (Not that it is always helpful, sometimes I just scare myself more)

I know reactions are VERY common with Rituxan. What if they pre medicate him, and he is sleeping and we don't catch it in time. He is young, if his throat is feeling funny I am not sure he would know how to tell us?? I am one TERRIFIED mama :sick:

Hi Crystal

You are driving yourself mad here! If you are really that conflicted about this treatment I don't think you should go ahead.

I went through the same things before Dougie had it, but I guess I was lucky because he kind of took the decision out of my hands and told the doctor that he wanted to give it a go - I'd be still going round in circles now if he hadn't!! Dougie's doctor was willing to do two treatments if there were signs of it working, but we carried on to four anyway. He had a lower dose than the standard dose. It was by far the easiest treatment he had tried, and they took really good care of him in the hospital; I don't think there is any chance that something would happen and no one would notice. Dougie hasn't had a count since March when it was 30. He's had a few dips, but for the last few months I've seen no symptoms at all. I think he is doing ok and I am pleased that we tried it - if it stopped tomorrow, its been really, really great having a break from ITP. Even though I thought I was quite relaxed about it, you don't realise how stressful it is until its not there :laugh:

After you've researched as much as you can, sometimes you just have to do the treatment equivelent of sticking the pin in the map and going for it.

Good luck with it all

Crystal:

Most people get through the infusions just fine. You'll be there, and patients are monitored pretty closely. Usually if there is going to be a bad reaction, it will happen during the first infusion. After that, you don't need to worry so much.

It will be okay.

Ok, so today I had a new game plan. I decided to look into other treatments well mostly Winrho and scare the Beep out of myself..He has done Winrho twice and was fine. He has had almost 20 rounds of IVIG which he can get serum sickness from just like with Rituxan..He has done too much Pred and that has many many side effects long run, and his teeth are already hurting from them..I also found PML can be cause by prednisone also..When I put this together I see that I have put him at almost all the risks I am terrified of, and Winrho may be close to as bad (luckily it was his very first treatment and I didn't have time to freak myself out) I have also read on here at one point where an adult's hematologist wouldn't do winrho because of the warning, but was willing to do Rituxan...Sooo..Am I totally feeling great, Um heck no!! I am feeling better though.It has been a long hard 2 years..

Chances of his recovering on his own might still be there, but they aren't as great. I don't like the idea of him not responding to prednisone so chances lower, I also don't like idea of keeping him from being a kid. I am no longer looking at the cliff thinking about climbing, I am now standing on the peak trying to get the courage to take the jump!!!

Ali: Oh I drove myself mad a long time ago!! He dropped back to 6k and 12 and I can't get him to wear his helmet since I allowed that freedom..His brother is 2 and they think they need to beat each other over anything (sometimes playful, sometimes not so much!!)

Guess I won't know if this is the answer unless we try?? I have worried myself sick for so long, but I am always so worried he will have an accident also...

PUSH ME!!!

Thank you all for your help, understanding and support

Brothers fighting - I have that problem too!

Dougie and one of his big brothers had a proper fight last week, fists and everything. They are both taller than me, but I got in between them and broke it up. Result was a great black eye, and some bruising and petechiae on both of them...........plus a really, really cross mum

Just close your eyes and jump Crystal. I know how hard it is to make up your mind because of all the possible bad outcomes, but like you say, there are bad outcomes to leaving things as they are too. Dougie's doctor said that PML is much more likely to occur with patients who have badly lowered immune systems due to long term steroid use and chemo, so the chances for your son are probably much much lower than you are reading.

I know its easy to say because the outcome for us has been good so far, but I really haven't regretted our decision