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Update

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14 years 3 months ago #21167 by Kelly H
Update was created by Kelly H
Hi everyone,

I just wanted to give you an update on how the Rituxan treatments went and how I'm doing. The treatments went off without a hitch pretty much. They pretreated with Tylenol, Hydrocortisone and Benadryl and no reactions. The Hydrodocortisone however (I'm assuming that's what it was) was not fun. For 4 days after each treatment I was very anxious and just didn't feel "normal". It felt just like a high dose of Prednisone.

Anyway, here are my counts so far:

12/07 platelets 5K and Rituxan round 1.
12/14 platelets 13K and Rituxan round 2.
12/21 platelets 9K and Rituxan round 3.
12/28 platelets 10K and Rituxan round 4.
01/04 platelets 5K.

I'm not giving up hope that this will work but the last test was a bit discouraging. I'll go for another test tomorrow and update with the results.

Question for you all, does anyone ever experience an immediate result from the Rituxan treatments or is it more normal for it to take some time?

I've got my fingers crossed!

Kelly

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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14 years 3 months ago #21169 by Kelirae24
Replied by Kelirae24 on topic Re: Update
good luck kelly it may still work I had a reaction the first time and want to try it again but no one will let me which I guess is best sonce reading the black box warning dont loose hope :)

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14 years 3 months ago #21175 by Dean
Replied by Dean on topic Re: Update
Be patient. It can take several weeks, (3,4,5) after the last treatment before counts will rise. I have had two Rituxan treatments and bounced around alot both times and got discouraged when counts did not rise right away. Stay positive!!!

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14 years 3 months ago #21178 by CindyL
Replied by CindyL on topic Re: Update
I guess I'm the odd duck here ;) . I had an increase in my counts after the very first dose of Rituxan. Every week they went up and I was actually surprised that my doctor wanted me to have all four treatments. It's now been one year and a couple of months since I did the Rituxan. My treatments didn't take nearly as long as the rest of yours.

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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 3 months ago #21211 by Sandi
Replied by Sandi on topic Re: Update
It's more normal to have a slower response. It takes time to kill off those B cells. I didn't respond until week 4.

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14 years 3 months ago #21217 by Kelly H
Replied by Kelly H on topic Re: Update
Stay positive, that was/is one of my New Years resolutions!:)

So of the few people that I tell about having ITP, they ask me what the purpose of Rituxan is. I can't really explain it to them as I don't quite understand myself. I've read on the PDSA site what it's supposed to do but I can't seem to wrap my head around it. Can anyone give me a simple explanation.....Rituxan for dummies?:P

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14 years 3 months ago #21233 by Dean
Replied by Dean on topic Re: Update
I cannot remember all the medical jumbo either. I usually google it and find a good site to refresh.

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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 3 months ago #21262 by Sandi
Replied by Sandi on topic Re: Update
Generally, the anti-platelet antibodies are generated by B cells and T cells, which are a type of white cell. Rituxan destroys the B and T cells, and in theory, the anti-platelet antibodies are no longer produced. All of this is temporary as long as Rituxan is in the body.

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14 years 3 months ago #21273 by DeeDee
Replied by DeeDee on topic Re: Update
Hi Kelly I've had ITP in 1988 and had my spleen removed and was on steroids for almost a year after surgery. I was in remission for 20 years and it come back. I don't know it could come back. In "07" I was on vacation and felt tried and I noticed my feet had red spots on them and of course it was back. Since then I've been through all the treatments and hospital visit and the stays in the hospital and nothing ever worked. Counts from as low as 1 and blood bruster in the mouth and tongue. The doctors send me to the U of M and I have been there for 3 yrs. And finally was put on Promacta and with in 1 month my counts are normal and I'm off my steroids as of today. I feel really good right now I hope it stay this way. Have you try that? Good luck I know exact what you feel. Dianne

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14 years 3 months ago - 14 years 3 months ago #21306 by Kelly H
Replied by Kelly H on topic Re: Update

Kelly H wrote: 12/07 platelets 5K and Rituxan round 1.
12/14 platelets 13K and Rituxan round 2.
12/21 platelets 9K and Rituxan round 3.
12/28 platelets 10K and Rituxan round 4.
01/04 platelets 5K.


01/11 platelets 5K.

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14 years 3 months ago #21307 by Kelly H
Replied by Kelly H on topic Re: Update
Thanks for the heads up Dianne.

I'm not sure how Promacta works but since I've tested positive for APS anitbodies my hematologist has ruled out any kind of platelet production stimulant (don't know if that's the correct term) because the amount of platelet production can't be controlled ie: I can't have my platelets go through the roof.

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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 3 months ago #21325 by Sandi
Replied by Sandi on topic Re: Update
Very good doctor!

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14 years 3 months ago - 14 years 3 months ago #21520 by Kelly H
Replied by Kelly H on topic Re: Update

Kelly H wrote:

Kelly H wrote: 12/07 platelets 5K and Rituxan round 1.
12/14 platelets 13K and Rituxan round 2.
12/21 platelets 9K and Rituxan round 3.
12/28 platelets 10K and Rituxan round 4.
01/04 platelets 5K.
01/11 platelets 5K.


Well, I can say they're at least consistently bad!:lol:

01/18 platelets 5K.

I wonder what that little bump was before, maybe the Hydrocortisone?

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14 years 3 months ago #21521 by eklein
Replied by eklein on topic Re: Update
The bump was probably margin of error (noise in the measurement).
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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  • 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 3 months ago #21531 by Sandi
Replied by Sandi on topic Re: Update
Or normal fluctuation.

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14 years 2 months ago #21762 by Kelly H
Replied by Kelly H on topic Re: Update

Kelly H wrote:

Kelly H wrote:

Kelly H wrote: 12/07 platelets 5K and Rituxan round 1.
12/14 platelets 13K and Rituxan round 2.
12/21 platelets 9K and Rituxan round 3.
12/28 platelets 10K and Rituxan round 4.
01/04 platelets 5K.
01/11 platelets 5K.
01/18 platelets 5K.


01/25 platelets 5K.

5K 4 weeks in a row, seems strange.

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14 years 2 months ago #21893 by Kelly H
Replied by Kelly H on topic Re: Update

Kelly H wrote:

Kelly H wrote:

Kelly H wrote:

Kelly H wrote: 12/07 platelets 5K and Rituxan round 1.
12/14 platelets 13K and Rituxan round 2.
12/21 platelets 9K and Rituxan round 3.
12/28 platelets 10K and Rituxan round 4.
01/04 platelets 5K.
01/11 platelets 5K.
01/18 platelets 5K.
01/25 platelets 5K.


02/01 platelets 6K.

Okay guys, so here it is 5 weeks since my last treatment and my platelets haven't budged. Can something still happen? I know I've read here that it can take up to 12 or so weeks to work. Does that mean, for instance, no movement at all in platelets levels until the 10th or 12th week? Or platelets steadily rise to normal in 10 or 12 weeks? Dean if you're there, I've read that you experienced a long wait time. Can you please elaborate? How long before you saw any movement?

I'm really trying hard to stay positive and I would be the happiest person in the world if my platelets would just level off at 30K to 50K. I feel as though my life has been put on hold for the last 9 or 10 years and my husband and I were only together for 8 months previous to my diagnosis. He married me 5 years later even with all of my problems so I guess I can't be all bad.:) I'm 40 years old and I want to start a family and I feel that it's just not going to happen.

Sorry guys, I know that ITP can give us good days and bad days. I guess this is my bad day and thank you guys for listening.

Kelly

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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 2 months ago #21905 by Sandi
Replied by Sandi on topic Re: Update
Kelly:

The Rituxan response is different for everyone. I saw mine go from 3 to 150 in a weeks time. That was the day of my fourth infusion.

I truly hope this works for you.

Which APS antibodies do you have?

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14 years 2 months ago #21915 by Kelly H
Replied by Kelly H on topic Re: Update
Thank you Sandi.

The APS antibody is Lupus Anticoagulant.

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14 years 2 months ago - 14 years 2 months ago #22103 by Kelly H
Replied by Kelly H on topic Re: Rituxan Update

Kelly H wrote: 12/07 platelets 5K and Rituxan round 1.
12/14 platelets 13K and Rituxan round 2.
12/21 platelets 9K and Rituxan round 3.
12/28 platelets 10K and Rituxan round 4.
01/04 platelets 5K.
01/11 platelets 5K.
01/18 platelets 5K.
01/25 platelets 5K.
02/01 platelets 6K.


02/08 platelets 7K.

Well, I had my follow up appointment with my hematologist today and she's not hopeful that anything is going to happen. She also wants to retest for Lupus Anticoagulant just to be absolutely sure that I have it. I don't know what to do next and neither does she. I think we've run out of options.

I have a surgery coming up in the next couple of months to have a lump removed in my breast and because of the Lupus Anticoagulant she is now concerned about IVIG. I haven't had any Prednisone since before my splenectomy so she wants me to start on that about 2 weeks before the surgery to see if that will bring my counts up and avoid IVIG.

I guess I'm stuck with low counts, I'm so bummed.:(

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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14 years 2 months ago #22256 by Kelirae24
Replied by Kelirae24 on topic Re: Rituxan Update
Wow Kelly looks like five is your lucky number too lol I've learned to hate that number and hi everyone else on this post I'm Keli diagnosed since 03 age 17 tried everything had a stroke on nplate oct. 2011 tried rituxin after allergic reaction four years ago recently first time 3 weeks ago was my first round no reaction haven't been in the hospital since my platelets even hit 96 second go in the office 2 weeks ago reaction broke out in head to toe hives throwing up shortness of breath they gave me per med Benedryl and sou medrol every time they were able to do the same when I had the reaction. But one question after my first infusion five days later my face swelled up like a balloon my lips hives everywhere dr insists it couldn't have been that delayed n it was an antibiotic I was on is it possible? Sorry I'm all over the place but also my third infusion was today haven't been able to finish bags 2 and. 3 my drs office called 911 the hives were so bad n had me escorted to th hospital is this worth it when nothing else works? I've done it all

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IMPORTANT!

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.