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Is Rituxan and waiting the only answer?

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14 years 6 days ago #21770 by belydncrck01
Is Rituxan and waiting the only answer? was created by belydncrck01
I have had ITP all my life, I got my spleen removed in 2001 and just recently found out that it grew back. I got a hysterectomy two weeks agoand it triggered my platelets to plumit and I lost over 2 leters of blood. My new Hemo gave me 125mg of prednisone one day, and 75mg the next day. I got 4 bottles of ivig two days in a row. 4 bags of red blood, 2 bags of plasma, and one bag of platelets. I had my first dose of Rituxan yesterday, and have three more to go. Doctor says my spleen has to come out again because it is the size of a reg. one, but because of all the scaring tissue and just having my uterus ripped out, he wants to wait for my platelets to drop again before they remove it to give my body time to heal. He said the Rituxan will only work on me temp. because it failed 9 months ago.Does this sound normal to anyone? I feel weird about waiting for my platelets to drop below 10 again. Is there no other treatment available for me?
Bryanna

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14 years 5 days ago #21796 by Dean
Rituxan is a waiting game. It can take several weeks after the last dose before you can see results. I had about 16 months with the first treatment and over 2 years now with the second treatment. I got quite discouraged when counts did not rise sooner than I expected it to. Some people have several years of remission with Rituxan. Everyone responds differently. You might respond better this time. "Wait and see".
The following user(s) said Thank You: belydncrck01

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  • 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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14 years 5 days ago #21803 by Sandi
Bryanna - what are your counts now?

Most people do treat and then do not treat again until counts drop. If you're in the middle of Rituxan with decent counts, there really isn't much more to do.

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14 years 1 day ago #21870 by belydncrck01
Replied by belydncrck01 on topic Re: Is Rituxan and waiting the only answer?
They went up to 369, but last night I got called in because Monday they were at 169 and last night they went to 128. This morning I am getting more IVIG,tomorrow more Rituxan, then Friday more IVIG. Monday we'll see if it works.(Kinda odd to me that no more blood work is to be drawn before then). Doctor said the IVIG wore off a lot fast than he thought. After tomorrow's Rituxan I will have two more infussions weekly.

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  • 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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14 years 1 day ago #21880 by Sandi
Why on earth would you get IVIG with counts of 128?

When I was getting Rituxan, my counts were under 10 the entire time. I had counts done once a week, on treatment day. I'm not saying that a person shouldn't treat during Rituxan, but not with those counts. My jaw literally dropped.

I'm surprised insurance would cover that.

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14 years 1 day ago #21881 by eklein
I agree Sandi, I totally didn't understand the aggressive treatment at those counts - is there some other medical issue going on that requires it? ITP alone and treating at those counts does not seem right.
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 22 hours ago #21885 by Dean
I also agree. Seems pretty agressive to be doing both Rituxin and IVIG.Why would they be double dosing with the IV treatments?

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14 years 16 hours ago #21889 by CindyL
Yeah, I read that too, and wondered why the IVIG at that count? And why with the Rituxan? The doc won't know what's helping; the IVIG or the Rituxan.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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13 years 11 months ago #21956 by karenr
When you were first diagnosed, before your first splenectomy, what treatments did you try? I see no mention of prednisone, usually the first treatment offered.

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13 years 8 months ago #24293 by belydncrck01
Replied by belydncrck01 on topic Re: Is Rituxan and waiting the only answer?
I have tried multiple steroids. My body didn't respond to the prednisone. I just got out of the hospital yesterday from another spleenectomy. I guess the doctor found 4 more spleens the size and shape of kidney beans on my colon, so they had to remove a section of my colon to make sure they got all the spleens. I am in massive pain. Having children naturaly is a piece of cake compared to this! Doctors are still testing blood weekly, but as soon as the 2nd spleen came out my numbers shot up to over 400k with in minutes of surgery. Hoping my issues with this are over!

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