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going off rutuxian ,platelets

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14 years 10 months ago #13155 by musicguy60
going off rutuxian ,platelets was created by musicguy60
might be starting rutuxian soon, how long is treatments, what happenes when you go off, what is time frame for this, while i am here, right now we are getting platelets , once somtimes twice a week, anyone doing this, and what are your counts, and what do you think

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14 years 10 months ago #13156 by eklein
Replied by eklein on topic Re: going off rutuxian ,platelets
Getting platelets is a bad thing for ITP. The platelets get gobbled up fast and you are worse off than before. It is usually only used in emergencies like emergency surgery.

Rituxan does not have any documented rebound effect so it works or doesn't but you shouldn't have any lowering of platelets afterwards.

Rituxan usually takes about 6 or 7 hours for the first infusion and maybe 3 or 4 for later infusions. Most people get four infusions, one a week for four weeks, but probably two would work just as well. Most people get a platelet increase between 4 and 12 weeks after the first infusion if they are going to get any effect. Some take even longer than that. Most seem to see a difference after 5 weeks or not at all.

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

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14 years 10 months ago #13175 by CindyL
Replied by CindyL on topic Re: going off rutuxian ,platelets
I'm the odd ball in responses. I saw a jump in just the first week; and I have just kept on going. My next blood test is on the 27 of this month, so I'll see if I've gone up or down. My first infusion was 3 hours and 1.5 for the next 3. I had no reactions at all.

Good luck with your treatment!

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14 years 10 months ago #13177 by server
Replied by server on topic Re: going off rutuxian ,platelets
I did 2 rounds of Rituxan. Each treatment lasted 5+ hours, with only a slight reaction with the first one each time. First treatment kept my counts in a safe range for around 7 months. The second round did nothing at all. I've had several platelet transfusions. They took me up over 20 for a day or 2 each time. Finally realising that they aren't needed that much as I'm not a bleeder.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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14 years 10 months ago #13187 by Rita
Replied by Rita on topic Re: going off rutuxian ,platelets
My husband had 4 Rituxan treatments 12/28 through 1/18/11. His first Infusion took 8 hours because he had a little reaction. He got more benedryl and a slower drip and all went well.
Here are his platelet counts after first week of Rituxan.
1/2/11 111
1/9/11 181
1/16/11 179
1/23/11 170
1/30/11 175
2/11/11 241
2/25/11 271
next test will be 3/11
We feel very blessed that so far Rituxan works.
Good luck with your treatment!

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.