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New here... some history about me.

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15 years 5 months ago #4184 by
I was diagnosed with ITP 6 years ago. Back then my CBC hovered in the 60-70k range. I did WinRho 4 times, three before surgery and one because my platelets got down to 25k.

WinRho worked great for me - counts peaked a week after and slowly declined over a 12 week period. The problem is that I have just about every known WinRho side effect. Vomiting, uncontrolled chills, body aches... you name it, I get it. I welcomed death during my infusions. It sucked.

At the end of last year, my hematologist mentioned Rituxan. My counts were around 40k in December, but since I'm symptom free we were holding off doing anything new.

Since the first of the year, my counts we steadily declining, and were down to 15k three weeks ago. My doc and I decided to go ahead with Rituxan infusions - I started two weeks ago and my counts went to 61k after the first infusion! During the first treatment, I got a fever, but I was OK by the next morning. The second treatment went off with no problems - I even went out for lunch afterward. :)

What are the odds of a permanent remission after going on Rituxan?
  • RodgerMac
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  • It's not a bug, it's a feature
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15 years 5 months ago #4186 by RodgerMac
Replied by RodgerMac on topic Re:New here... some history about me.
I'm relatively new here too. I finished my Rituxan treatments in December and have now moved into the phase of CBC every month with a follow up appointment with my hemo every three months. I couldn't be happier with the results so far. Although I must point out I never had one symptom even when my original count was down to 20k. So far five months remission and no pred. good luck.
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15 years 5 months ago #4199 by barrelgal
Replied by barrelgal on topic Re:New here... some history about me.
personal experience: I've had rituxan 2x's and about to start the 3rd and both times have behaved almost exactly the same:
about 2 weeks after I finish the last of the 4 weeks I see a steep rise in my #'s, for me it doesn't get to 'normal' range but I go from sitting in the 20's to the high 80's
I hover around the 70's and 80's for several months then about 7 months after rituxian I start a steady decline until I treat again.

That's the cycle I see at least. It's still my treatment of choice as it only takes 4 days every 7 months vs more often with other treatments I've tried. It doesn't get me to a 'normal' level but I feel pretty safe around 80. I think it may have raised my 'basement' level as I used to be down into the single digits but haven't seen any single digits since I started Rituxan.
15 years 5 months ago #4209 by
fredco wrote:

What are the odds of a permanent remission after going on Rituxan?

That can't be answered. What is a permanent remission? :)

A friend had Rituxan at leaset 3 years ago - her count is fantastic! Permanent?, who can tell?

Good luck to you!
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15 years 5 months ago #4211 by eklein
Replied by eklein on topic Re:New here... some history about me.
Like Melinda says, what is a permanent remission? Since ITP isn't 'curable', a permanent remission just means you die before you relapse. Like my partner says about relationships - in every relationship you either break up or you die. I don't mean to be gloomy at all! It's just, that's how it works.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #4218 by Sandi
Replied by Sandi on topic Re:New here... some history about me.
Yup - I'm with Erica on that.

I have had Rituxan twice. I'm on my sixth year of remission.