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Retuximab and evans syndrome???

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14 years 2 months ago #17003 by tinagbb64
Retuximab and evans syndrome??? was created by tinagbb64
well the doctor now wants to do the retuximab treatment...he wants to start it this week...does anyone know if it will affect her red blood cells since she has now been diagnosed with hemolytic anemia also....does it treat both....does anyone know....and can anyone tell about the side affects....i know everyone reacts differently....tina
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14 years 2 months ago #17017 by karatemom3
Replied by karatemom3 on topic Re: Retuximab and evans syndrome???
Tina, Just worked 14 hour But you need to here this. Matt got rituximab for anemia with great results; Hgb over 12 for 4 years. Praying for good results for your daughter. Joan
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14 years 2 months ago #17018 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
Thank you so much.....been on pins and needles....gonna start treatment this evening....made my day..tina...:)
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14 years 2 months ago #17038 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
Does anyone have an idea how long it would take to see positive results from the Rituximab treatment .... Carina is receiving her first dose right now .... :( scared and worried .... Tina
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14 years 2 months ago #17047 by karatemom3
Replied by karatemom3 on topic Re: Retuximab and evans syndrome???
Hi Tina, Every one reacts differently but every positive experience I read about gives me hope. Matt chose Rituxan over increasing Prednisone dose for dropping Hgb. He got 4 weekly treatments. Hgb was 9.6 at start, up 10.5, 11.1, 12, 13.9 over next four weeks. Platelets remained between 120 and 140. He did not have any side effects. Keep us updated. Joan
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14 years 2 months ago #17050 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
Hi Joan...wow thats awesome...carina is getting out of the hospital today....she did really great...she didnt have any side effects either....she still has 3 to go....her platelets were at 221k when she started because she had an IvIg treatment last thursday.....and her hemoglobin was at 8.9....when she got her IvIg she was 4k and hemoglobin at 8.2...tina
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14 years 2 months ago #17292 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
Well carina has had 2 retuxmab treatments and a 3rd tomorrow.....she has done really well....she looks good....very minimal side effects up to this point....im keeping my fingers crossed and praying ALOT....tina
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14 years 2 months ago #17310 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
I was wondering if anyone could tell me....once the retuximab has started...do the numbers fluctuate up and down....shouldnt you see some sort of a norm or an increase....today carina's platelets are at 94k and her hemoglobin is at 9.5 and her white blood cells are at 12.7....the platelets just seem so low or i should say they actually have continuously dropped since she began from well over 220k down to 94k....i hope this is not a bad sign....i know i need to think positive but it is so hard at times.....tina
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14 years 2 months ago #17337 by wildroseao@aol.com
Replied by wildroseao@aol.com on topic Re: Retuximab and evans syndrome???
Hi, Tina--

My Caitlin's overall very positive Rituxan experience charted a few ups and downs--she got pneumonia after dose 2-it was going around at school and her immunity was down--and it took her platelets a few weeks to recover. But after that, things went up, up, up. Her remission is now 8 years, 10 months, with platelets still in the normal range as of March or April of this year.

Your daughter had IVIg about 3-4 weeks ago, right? It could be that its effects are wearing off, and the Rituxan hasn't really kicked in yet. It takes some time for most people--so here's hoping you see an upswing in the next few weeks! So far, so good!
Ann, Caitlin's (24) Mom
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14 years 1 month ago #17417 by specialk16
Replied by specialk16 on topic Re: Retuximab and evans syndrome???
Yes, it just depends.... After my first treatment my platelets went down,,, but by the last it went up (this was during my first round).... everyone is different... Good luck!
Kasha
MCTD (Lupus/Raynauds), Sjogrens, ITP
Plaquenil 400 mgs
Prednisone 10 mgs
Imuran 50 mgs
Rituxan 2005 and 2008 (can't take anymore, body rejected it)
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14 years 1 month ago #17419 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
Thank you so much.....awesome information....yes she had IvIg about a week to a week and a half before she started rituximab....so i am praying....she looks great....i can see a change in her skin tone and her over all energy level as well....so ...so far so good....tina
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14 years 1 month ago #17420 by tinagbb64
Replied by tinagbb64 on topic Re: Retuximab and evans syndrome???
thank you for your info...i know everyone is different and we have to wait....so did you have to have another round of rituximab??...is that what you ment by your 1st round....?? tina
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