Hoping for some encouraging words on Rituxan

I have been reading the boards for a few months now and can't express how much they have boosted my spirits! It is so helpful to hear everyone's experiences--and simply the fact that there are other people out there dealing with the same thing!

I was diagnosed over the summer, although I had low platelets (12,000) back in May. Tried decadron pulse (only effective for 2 weeks), then 60mg of prednisone (boosted platelets to 85,000) but my platelets dropped as I tapered, down to 17,000 finally. After the 17,000 count, my hematologist and I decided on Rituxan.

So I just had my third treatment of Rituxan. My counts today were under 10,000. So I'm back on prednisone as of now, altho fairly low dose.

I know my counts will bounce around with Rituxan and not stabilize for 4-12 weeks (I think?) after the first treatment. They had been 85,000 at the second treatment. I had gotten my hopes up that they would be even higher today. (I'm glad I didn't know how low they were when I was carving pumpkins with my kids this weekend.)

Did anyone out there have their counts bounce as low as mine before heading back up with Rituxan? Thanks in advance for anything you can share!

Sarah

My counts were in the teens until my fourth infusion, then they jumped up to over 50, then on up. A bunch of us here had a big increase around week 4.
Erica

I guess I was the different one. My counts took a big jump after my first dose of Rituxan; I went from 42 to 155. The second week I was 178.I took a drop at week three, down to 112 but have been steadily going up since; Oct. 16: 209; Oct. 24 217 and on Halloween, 298. I can't remember the last time I was that high unless I was prepping for surgery.

I wish you luck with your Rituxan treatment.

Hello Sarah Glad you decided to start posting. My count has been down to 1, that was in March of this year. I started NPlate then and it worked really well, but I didn't like the side effects and wasn't looking forward to weekly shots for ever! So we tried Rituxan. I was on both for a short period of time so it's hard for me to say when the Rituxan started working, but it did! I had my last NPlate shot on the same day as my 3rd treatment of Rituxan. The highest my counts were was 288 the week after my last Rituxan treatment on 6/4/10. They have been declining since then but staying in a safe range, for me anyway. My last count was 33, going back a week from today for another count. You gotta remember that everyone is different. Stay in touch!

Thanks, everyone, for the responses. Cindy, I have been reading your updates and very happy for your good numbers! I'll hope to get there myself in a few weeks!

Have a great weekend, everyone.

Sarah

Rituxan didn't work for me but the only good thing I can say about it is that I had almost no side effects from the 4 week course. I was really hoping it would work but it didn't

MDgal - Your post could have been mine too. First treatment was 6+ weeks ago and counts have steadily dropped to under 20 now. I was so hopeful, especially since the treatments went so good for me. But I hear 8 weeks is about the max for it to work, so I am disappointed. My hemo says I'm her first patient for it not to work (so far). I told her, you're welcome! Anyway, I go back in two weeks and will probably do IVIG again. At least it works, 3-4 months for me, so I really shouldn't complain.

Went back for my fourth treatment today, and my platelets were up to 65,000. Trying not to get too optimistic, but that is better than under-10,000, of course! I am hopeful that some of it is due to the Rituxan since the level of prednisone I am taking has not done anything approaching 65MM in the past. (10 mg/day) Will see my hematologist in a week and see what has happened then.

I will say that the infusions all went very smoothly and I have not had any adverse effects. It seems illogical that I can spend 6-8 hours hooked up to a big bag of drugs and then get up and go back to work or play with my kids like nothing happened, but that is how it has been for me.

thanks for all the input!

Sarah

Sarah:

I hope you see a rise and I'm very glad it was side-effect free! Good luck!

i have had 4 doses of rituxan while being on prednisone {ugh}. every week for 4wks my platlets dropped....after my last iv treatment i went from 108,000 to 50,000...last week after being done with the iv treatment, and going down on the prednisone i went back up to 101,000..This week iam down to 10mg of prednisone, no iv treament so we shall see if my counts went up stayed the same or dropped... I Was diagnosed with itp 8yrs ago when i had only 1thousand platlets.. i was treated with high doses of steriods, and IVIG..it was a long 2 months on the prednisone but it worked and my platles stayed strong, Until this yr in sept when i started feeling run down my periods where crazy heavy and i started bruising...I went to my dr and blood test showed i was at 5thousand...ITP WAS BACK UGH.. i had a bag of platlets this time, because i was bleeding, i had 3 bags of IVIG, and was put on high doses of prednisone, ugh no fun..after lots of discussion with my dr we decided to treat the itp with Rituxan...Now after 4 treatments and still on the prednisone we wait and hope the numbers go up and stay up..The prednisone is awful makes me feel like shit..sry but thats the best way to describe the feeling..my face is puffy my body aches i have gained 10lbs, i have facial hair, i have mood swings, i cant sleep. But hopefully after my next dr visit, i can come off the prednisone, well actually i will be off the prednisone because i really cant take much more, its been 2 months of steroids and i started at 100mg's... I hope the rituxan works...

My medical insurance sent me the statement from my first Rituxan treatment and all I can say is, wow. I knew it was expensive, but what a crazy number when you see it in black and white.

I work for a huge company, and I'm sure these medical costs are a drop in the bucket of the premiums we are all paying ... and I have probably been paying more in premiums than I have been using for years ... but I feel a bit guilty that I am using up so many $$$ when I am still able to live a normal life. That number seems like a confined to bed or majorly impaired quality of life or major surgery kind of number. Wow.

Sarah

Hello RJS I think we can all relate to the prednisone side effects. Not pretty stuff! So, in the 8 years since diagnosis you've only had the steriods and ivig? That's good news! Well, now the Rituxan. I'm gonna believe that it will work for you. Keep us posted.
Sarah, I don't know for sure the cost, but I've heard it's a stupid amount too. Don't feel guilty, that's what insurance is for! You said,

when I am still able to live a normal life.

Excellent attitude!

i just finished my 4th rituxan and my count has gone up significantly...my counts have gone like this (with two weekly cbc), week 1- 16 thousand, week 2- 8 thousand and 32 thousand, week3- 63 thousand and 47 thousand, week 4- 60 thousand and 71 thousand, i am also tapering my prendisone now too...i was diagnosed at 3 thousand and my counts bounced between 5-17 before starting the rituxan....so there is some major improvement with it...the side effects are not too bad i get a little woozy and my heart races a bit during the infusion and shortly after but its not bad at all.

Keep positive. It will work! I may need to start Rituxan next week if I can't maintain my count on Prednisone.

Saying a prayer for you.

RJS and JMort,

Thank you for sharing your good Rituxan results so far and hope you all are continuing with the good numbers. I cut down my prednisone dose this week and my platelets stayed at 60,000. I get to step down my pred dose again next week and I am looking forward to it. I'm not sure I can get through the holidays if I am still taking pred--my family for sure would not enjoy spending time with me.

Sarah

Rituxan didn't do anything much for me until week 9. At that point I started climbing
and within 2 weeks went from 42 to 344 before settling around 270. Been there for 6 of the past 7 weeks (had one unexplained drop but right back the next week).

my counts have been down the past two test they have been at 25k and 22k....i am also tapering prendisone (i started at 60mg now 20mg)..my question is that is i common for counts to jump around a lot during rituxan and does it have to do with the prendisone taper? also the dr said he wanted my counts to be at 30k and he would be happy does that sound about right...i am a young male and he said that that makes my case more difficult

Jmort:

Tapering Prednisone during Rituxan can cause counts to jump around. They can jump around even without Prednisone in the mix.

30k is usually considered a safe count which is why your doctor might be happy with it. If you don't have a very active lifestyle, that is a decent count. If you are pretty active, you might want to shoot higher.

I don't know why being a young male would make your case more difficult. Older women have difficult cases also.

Well i am very sad to say the Rituxan has not yet worked for me as of yet that is i am not really sure how long it takes but as of right now it's not working...I'm not sure if it will..I respond very well to ivig though, but it doesn't last long ..So my Hemo has started talking about taking my spleen out :S makes me nervous i really do not want to have my spleen out...I'm not sure why i am so against it but as of right now having my spleen out is not MY option...{bottom line is spleen removal surgey scares the shit out of me} ITP has become very frustrating for me at this point.I honestly don't know where to go from here..... I keep reminding myself it could be so much worse, and everytime i go to the Hemo/oncologist I am reminded exactly just how much more worse it could be..But it doesn't make my frustrations any less.

RJ,if you don't want to have your spleen removed, you don't have to! It's your body and nobody can make you do something you don't want to do. I'm not sure how long you've been diagnosed for, but if it's under a year, talk of a splenectomy is way too soon. Unless you have serious problems. I waited two years before I had mine out, and it didn't work. Nothing did until I had Rituxan in Sept/Oct. Hang in there, it might still work. I've heard it can take a while to kick in. I'm in the minority, it started working for me right away.

Be patient.

today i had my blood draw and my platelets are 472thousand...OMG i cant believe that they are this high..two weeks ago they were 17,thousand i had Ivig and Prednisone, and last monday they were 272,thousand..and today one week later 472thousand, now im scared thats too many ugh....IM HAPPY BUT NERVOUS!! Maybe the Rituxan is working, maybe we just didnt wait long enough, i have read in some cases it does take awhile, maybe my Hemo should have waited longer instead of giving me IVIG..now im worried i have too many is there such a thing?

Yes there is a DX of Thrombocythemia for too many platelets but that doesn't apply in this scenario. Thrombocythemia takes into consideration your history and obviously you have a valid reason for your platelet count. High platelets from IViG and Rx should settle down in several days.

BTW I don't think your count would be considered "HIGH" @ 472 - it would be LOTS higher before they Dx Thrombocythemia plus your treatment excludes you.

It took me several weeks to settle into my new "normal" (270's) following Rituxan - but my post Rituxan high was only 344. I don't think we can read anything into a temporary high vs a new normal.

well ive had more positive counts this last week and a half between 45-53k which for me is good...my dr. is suggesting i get vaccinations in case of a splenectomy in the future...im not interested in that being a option for a while as if he mentions it as a major possibility i am already scheduled for a second opinion with another dr....but are the vaccinations appropriate at this time just in case?

Depends on if you really want them or not. If you plan to go through with a splenectomy in the next year, you could get them. If not, they aren't necessary. They can be given pretty close to surgery time, so it could wait.

I didn't even get my shots until after my spelenctomy.

RJS, I'm so glad the Rituxan has been working so well for you! That's great news! I hope you are at the start of a nice, long remission.

JMort, is there another reason to get the vaccinations? Something to do with winter months and all the bugs going around? I think platelets in 40s and 50s are pretty good -- then again, I have massively adjusted my definition of "good".

My platelets were at 55 this week, and I stopped the pred (was only taking 5 mg every other day). Next week I am 7 weeks post-first-treatement and sooo hopeful they will stay over 50.

Sarah

I haven't been here in a while. My last Rituxan was 26 months ago. It did take a while to go up at that time. My hematologist said I was one her slowest patients to show a response. After about 5 months of 50,000 or less it went up to over 200,000 and stayed there until this week. Today at my four month follow-up it was 64,000. I know this is not bad but after almost 2 years of 200,000+ I almost forgot I had ITP. I check the next CBC in two weeks or sooner if necessary. Two years of remission is pretty good though, I am very fortunate.


Debbie :lol:

Debbie, mine dipped down from 250 to 110 a year after Rituxan - I was also having some other issues at the time and when I cleared those up lo and behold, counts jumped back up again. Here's hoping - Erica

Debbie:

I've had dips too. Twice went into the 60's and both times rebounded on my own back to the 200's. Keep hoping!

hello i had a relaspse after 2.5 yrs since my rituxan. last week my platelets were at 4. took ivig after my 2nd rituxan count went up to 35000 then 65000. next day had my 3rd rituxan on thurs. i went to my hemo mon morn and counts were at 198000. we think its the rituxan kicking in because the ivig for me in the past would of only lasted 5 to 6 days. that is just my history. this is my 4th relaspse no spleen took it out on 2nd time, but give rituxan a chance i have bounced back each time with counts in 300,000 to 400,000 and have gotten about 2 yrs each time. i hope this helps just believe and hope and it will get better. i am 40 yr old male.


talk to your platelets good luck
pete