Rituxin - results????

I have had ITP for 16yrs & the last year & a half has been awful.
In & out of dr's & hospitals, more meds & steriods I could even dream of.

I have been on the NPlate for a while now & it is temporary for me (usually along w/ 3 days of Gamma) so I am looking to get off of it. I also found out that if we get pregnant again (which we are trying) the Nplate is not safe for a fetus.

Here is my question: I went to a specialist in the city a few weeks ago & he suggested 4 weeks of rituxin along w/ high doses of dexamethasone (sp??). He feels pretty confidnet that I will go into a remission b/c I have been in one for so long in the past.

I had my second treatment yesterday, all went well, no side effects!
Of course my count was from a 150 on Monday & 55 yesterday!
My regular oncologist was freaking out, he wants more Nplate and prednisone, I said no to the Nplate and yes to only 10 mg of prednisone (can't take the hair loss, weight, and mood swings). My oncologist was yelling at me that I need more meds & that I will be below 20 by Monday and in the hospital!

My question is: Anyone who has had this treatment, did you flucuate a lot with your counts until the treatment ws over? Trying to ease my mind a bit. Thank you!!!!

oh yes, I believe numbers all over the place are common with Rituxan. They are for me anyway! I was on NPlate and Rituxan at the same time for a little while. I started NPlate on 3.26.10 after the 2nd shot my count went up to 377! I started Rituxan on 5.14.10 with a count of 287....anyway here hows my numbers jumped around since starting Rituxan, 200, 125, 223, 288, 138, 44, 48, 94, 79, 61, 33, and just today 64. Absolutely no rhyme or reason to any of it!

If your doctor is yelling at you I think you need a new doctor. Doctors should not be having temper tantrums or panicking. Also he does not sound very well informed.

Good luck with the Rituxan!

Are you having bleeding problems with your low counts?
Erica

My numbers were on the downtrend during my rituxan treatment. I got as low as 15 and after my last IVIg, was around 240. It then slowly dropped back to around 30 before I opted for the splenectomy.

I agree with Erica. A good doctor in my opinion is not only one that won't yell at you, but will work with you to sort through all your options to find what you're most comfortable with.

Chris

Wow - I don't think I'd take that. At 3, my doctor was telling me to go back to work - he never threatened me. While I was doing Rituxan treatments, my counts were under 5. He suggested I take Prednisone and I said no - I never got yelled at. He worked with me, not against me.

Was this specialist an OB or a hematologist?

Thank you everyone for getting back to me.
The specialist in the city wrote me back & will call me today or Monday morning.

It's my regular hematologist is the one who is yelling at me and always wanting me to add drugs and stuff. I am thinking about switching dr's, I hate the feeling of being scared of someone.

So by the sounds of it, you all had your numbers jump around during the treatment.

I have had the spleen removed and it was a temporary fix for me.
I am praying that when I am done with the treatments, I a, on the road to remission for a while, I am sick of seeing the inside of the dr's office.

If I could commute to the city, I would make the specialist my primary hematologist, it's just too far.

It's amazing that many of you are walking around with numbers lower than mine & your dr's are working with you & telling you to live your life. I have a dr yelling & telling me I will bleed out & end up in the hospital! It makes this disease worse!

And I do not have any bleeding problems when I go low, maybe some bruising!

THanks again everyone!

I don't understand

what level do people in USA consider normal levels? In England between 200 and 400 are normal platelet levels. Yet you seem to be receiving treatment at platelet levels 188's. Though if that is a one of number in a series. But still, some of those numbers appear to be very good in retrospect. It would depend on any 'bleeding' issues you have too.

The other week my platelets dropped down to 10 and rose to 37 in the same evening (not my normal pattern) and went through to the clinic and decided not to give me steriods or Intravenous Immunogloblin which in the long term am thankful off. (since am kind of trying hard to loose a stone). I do not know at the moment what my platelet level is because the first test at the clinic - the blood er clotted in the tube? and got called in before the second test results showed. I go back on October 12th. But you are having all this treatment when yours seem to be higher than what mine were. I am guessing mine are at an okay level 37 or 280's or they would have rung me:-} Like the local A&E did in the first place this time. - I had gone in for what I thought was another reason as wasn't feeling well. Turned out to be ITP.

I have never been on Ritunxin and not heard of it till logged onto here. Yes I have had my spleen removed (1994) when my platelets would reach to two if I was lucky and that in itself is okay but I really hope you been told the right information about aftercare.

I started Rituxan at 20. I was off all steroids at that point. I had been doing Dex pulses but me and the Hemo determined they were not working.
So anyway, at first dose I was at 20.
Second dose at 24.
Third dose at 21.
Fourth dose at 43.
After the series it went like this: 69 - 108 - 133 - 121 - 128 - and this week 151 -Happy Birthday to me!!

Regarding the doctor/fear issue - my Hemo assured me everything would be okay when I first got diagnosed. With the Pred, I went up into the 180's and stayed up all through the taper - but crashed two weeks after I was off completely. It was at this point that he scared me when I told him that I didn't like the steroids and what if I didn't want to treat at all (he knew I wasn't even going to entertain splenectomy). I asked him if I could just live with super low platelets and he told me that they will not stay low - they will continue to get lower and eventually I will go to 0. So after he told me that, I got almost frantic when I had these really low dips - however, I think he picked up on how much of a worrier I am because I feel like he became a very supportive and calming influence again and when I did get low and would freak out after getting the results, he would tell me not to worry and when HE reacted calmly, it helped me to cope.
I think what we went through in the beginning was the process of getting to know each other. Doctors want us to be concerned about our health because they can only prescribe and give recommendations. It's up to us to choose to follow through and this IS a condition to be concerned about.
However, a doctor who is yelling and guilt tripping and essentially tantruming like you described is, in my opinion, extremely unprofessional. I think I would be in a mental hospital if my Hemo was like that because I am paranoid enough about this as it is. Since ITP is a condition that is made worse by stress, I would really question a Hemo that is using tactics to stress a patient out in order to get them to follow their recommendations. He would probably argue that he's informing you but it seems to me that he's forgetting it's not WHAT you say but HOW you say it. And in the end, the patient has the right to decide what treatments he/she is willing to engage in.
If you are unable to have access to a different Hemo, or if you find that the current Hemo is actually the most well-informed about ITP, I would suggest that you try to sit down him him and have a conversation about how he's making you feel with his practices. There is a way to work together, even if you disagree - perhaps come up with a plan such as - Okay, I'm not willing to start steroids at this level, but let's determine together at what point it would be too dangerous for me to not take them again, depending on the history of your symptoms, etc.

Anyway, that's just my 2 cents. I hope the Rituxan works for you.

-Chelle

Hi, I know how you all feel. I have all my doctors panicking over my platelets, and it just freaks me out. It is mainly because I am 62 years old. The magic number seems to be 60 years old. Doctors can handle low platelets until you reach the 60s. I just want them to be calm, then I can remain calm.

My platelets do go all the way down to 1000 (at least they have during the last 6 weeks).
Because I watch my diet and follow certain food groups, I have not been an active bleeder at 1000. Just a few blood blisters--hardly no brusing--really not that bad. I went to USC yesterday to start a trial for Veltuzumab (which is almost identical to Rituxan--but only two shots--no IV injection). My platelets were at 12000 in the morning. But the time they did the blood draw at USC, my platelets had gone up to 32,000--this was a firt time for me. So, I may have to wait until they below 30,000 to go back on the study (which will probably be by Monday). Also, I think my platelets had gone down low after having IVIG (2 treatments) because they gave me 3 inoculations a few days earlier. I think I could do okay with platelets at 1000 if the doctors didn't panic. I haven't met one doctor that didn't panic on me as yet.

That's my 4 cents Hope the Rituxan works for you-and try to stay calm.

Thank you for all o fthe positive feedback.
I can actually breathe a bit & enjoy this wknd w/out the words of
my hematologist running through my head.
I too have high levels of anxiety, so this disease w/ a yelling dr does not help me at all!!!!!

My hema in the city emailed me back & did not seem too concerned at all.

So between his email & all of your respsonses, I am going to try & enjoy the
rest of this beautiful wknd!

I will let you know how the rituxin works, 2 down, 2 to go!!!!!!