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Ritux - Your post treatment counts?

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12 years 10 months ago #31133 by 2Jacks
Ritux - Your post treatment counts? was created by 2Jacks
Do you mind sharing your counts post Ritux treatment for adults with Chronic ITP.

Thank you in advance!

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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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12 years 10 months ago #31135 by Sandi
Replied by Sandi on topic Ritux - Your post treatment counts?
Sure!

First infusion - 8k
Second infusion - 11k
Third infusion - 3k
Fourth infusion - 150k

Counts were above treatment level for 13 months after that.

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12 years 10 months ago - 12 years 10 months ago #31137 by 2Jacks
Replied by 2Jacks on topic Ritux - Your post treatment counts?
Thanks Sandi - congrats on being in remission!

My husband's counts are:

1st Treatment - 29,000
2nd Treatment - 62,000
3rd Treatment - 33,000
4th Treatment - 34,000
1 week post 4th Treatment - 29,000

We're trying not to be disappointed or stressed by the results so far but it's a bit difficult when you have such high hopes.

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12 years 10 months ago #31138 by CindyL
Replied by CindyL on topic Ritux - Your post treatment counts?
My counts started going up right with the first treatment.

last count before starting: 42
After 1st treatment: 155
2nd: 178
3rd: 112
4th: 209

Highest I've been since then was 413 in Jan. 2011 and the lowest was 35 in July 2011.

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12 years 10 months ago #31139 by 2Jacks
Replied by 2Jacks on topic Ritux - Your post treatment counts?
Thanks Cindy.

So this may not work for my husband . . .

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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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12 years 10 months ago #31147 by Sandi
Replied by Sandi on topic Ritux - Your post treatment counts?
Goodness, it's way too early to consider Rituxan a failure. Most people do not have a response until 4 to 12 weeks after the first infusion. Cindy and I were the exception.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 10 months ago #31154 by dru
Replied by dru on topic Ritux - Your post treatment counts?
This was mine, but I was also on prednisone that was tapered during the 4wks. I respond well to prednisone so I suspect that is what raised my counts at first rather than the rituxan.

First round in 2005 also on 20mg prednisone
1st treatment: 19k.
2nd: 92k
3rd: 252k
4th: 137k

Second time 2011 also on 20mg prednisone
1st: 18k
2: 67k
3: 106k
4: 102k

Don't be worried and keep your hopes high! Lots of people do not respond right away. Good luck and let us know how your husband is doing.

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12 years 10 months ago #31157 by eklein
Replied by eklein on topic Ritux - Your post treatment counts?
I don't have the exact numbers but I started out well under 30 and by the 4th infusion I had jumped to the normal range. Then a year later I had two infusions (and an allergic reaction, no more infusions) and my counts jumped up that time shortly after the second infusion. I've been in the normal range for the majority of the last four years.
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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  • 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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12 years 10 months ago #31158 by karenr
Replied by karenr on topic Ritux - Your post treatment counts?
Because my platelets were 9K the month before I started Rituxan, I was on 30 mg. pred/day, decreasing to 20 mg/day during my four drips.
1st: 19K day of drip, 114K next week
2nd: 26K 6 days after 2nd drip
3rd: 18K 6 days after 3rd drip
4th 25 K 4 days after 4th drip
Counts ranged from 21K to 44K in 4 months after last Rituxan drip. My pred was reduced to 11 mg/day during this period. Obviously Rituxan didn't work for me. I didn't suffer any bad side-effects either.

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12 years 10 months ago #31173 by alisonp
Replied by alisonp on topic Ritux - Your post treatment counts?
Hi

I am also waiting to see if Rituximab has worked for my 14 year old son who has had ITP for four years.

He started this treatment on 9th January and his counts to date have been as follows

Before first drip - 22
Day of second drip - 72
Day of third drip - 51
Day of fourth drip - 31
Three weeks after fourth drip - 33

His next appointment is on 22nd March so we shall see then....... I can't really tell the difference once his count goes over 20 or so. The dr said at his last appointment that 33 after three weeks meant that the rituximab was working to some extent (normal count is in the teens) and that he thought my son's count may continue to rise for a bit yet.

Keep the faith :P

Ali

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12 years 10 months ago #31175 by dismantled
Replied by dismantled on topic Ritux - Your post treatment counts?
I was also on prednisone when I started Rituxan. I don't remember my exact counts, but I responded unusually quickly, seeing improvement even after the first infusion despite tapering off the prednisone. Rituxan gave me a little over 3 years of remission with counts staying stable over 150. The ITP returned in December 2012, and I have no qualms about doing another Rituxan treatment as soon as my counts drop low enough to necessitate treatment (around 50k as of 1.5 weeks ago, but dropping rather quickly). I was diagnosed in April of 2009 at 18 years old, and did 4 infusions of Rituxan, 1 week apart, in late September through early October 2009.

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12 years 10 months ago - 12 years 10 months ago #31177 by 2Jacks
Replied by 2Jacks on topic Ritux - Your post treatment counts?
Thank you to everyone!

We'll wait and see. My husband's average count since diagnosis five years ago, without treatment, is 34,000 so being down to 29,000 this past week is frustrating.

I'm really hoping this works. As you all know, it's a frustrating disease and has impacted every facit of our lives for the last five years (that sounds dramatic but as you know, it's always top of mind). It would be nice for this to work and enable him some sort of normalacy and break from weekly blood tests. He's been so rundown as of late, I was really hoping this would give him a boost.

Fingers crossed! Thanks again!

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 10 months ago #31179 by amberyard
Replied by amberyard on topic Ritux - Your post treatment counts?
started out 26, then after 8 rounds the highest was 105 dropped to 99 then 77 and now 83. Yeah it didn't work for me....

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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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12 years 10 months ago #31180 by Sandi
Replied by Sandi on topic Ritux - Your post treatment counts?
Weekly blood draws might be a bit excessive if his counts are pretty stable. It gets old fast. He might want to talk to the doctor about every other week, at least. Most people know if they have dropped to single digits.

If he gets low, what would he do to treat? Does anything work?

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12 years 10 months ago #31181 by 2Jacks
Replied by 2Jacks on topic Ritux - Your post treatment counts?
Sandi - so far the only treatment has been 60mg of Prednisone for 10 - 14 day periods. On the Prednisone his count has ranged from 46,000 to as high as 114,000 but closer to the 46,000 range. The 114,000 was the highest he's been since diagnosis - I honestly thought the lab had made a mistake.

Amber - How long ago did you receive the treatment? I'd be ecstatic if he could get to the 83,000 range without further treatment. I know it's not a 'normal' count but it's still fairly high for someone with Chronic ITP (and in my husbands case an average count of 33,000 - 34,000).

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12 years 10 months ago #31184 by alisonp
Replied by alisonp on topic Ritux - Your post treatment counts?
Amber

I just wanted to say that I would consider your count to be a success. OK, its not "normal" but its great for living with no restrictions or problems. I can see how its disappointing, but I know my son would consider a consistent 30 to be a success after 4 years with a count under 20 most of the time. And I honestly don't think he would even consider ITP from week to week if his counts were above 30. :laugh:

Ali

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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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12 years 10 months ago #31186 by Sandi
Replied by Sandi on topic Ritux - Your post treatment counts?
I agree. Anything that allows you to maintain counts above treatment level, even though it may not be normal, can be considered a success. Technically, it's called PR, or partial remission.

It can be hard to accept, but living with counts 30k and above, even if not in the normal range, is acceptable for most daily living. If you keep striving for normal, you might just keep getting disappointed and will not be able to move on with life.

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12 years 10 months ago #31264 by firkins
Replied by firkins on topic Ritux - Your post treatment counts?
Hi -- just adding my voice to the choir with Ali and Sandi.

My daughter's hematologist is clear: If her platelets are over 50, she can do anything she wants: ski, bike, mountain climb, etc. (Just not surgery!) Using that as a lens, then I'd say anything over 50 is a "success." The numbers can be maddening.

I can't remember Mia's numbers after each treatment but I know they were inflated by all the prednisone she was simultaneously receiving. She does seem to be responding to the rituxan -- now in normal range -- hopefully for a while.

It's good to remember what Sandi said -- that results from Rituxan can come up to MONTHS after the last treatment. So keep the faith! Hoping for high platelets for your husband!
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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12 years 10 months ago #31327 by 2Jacks
Replied by 2Jacks on topic Ritux - Your post treatment counts?
This week he's down to 27,000 so he has an appt with his Haematologist next week.

This is sooooooo frustrating! We had such high hopes. I know there is still time for improvement but we're still frustrated.

He felt amazing when he got up to the 62,000 and now if he sits down for 5 minutes on the couch he's asleep. He has such low energy.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 10 months ago #31500 by amberyard
Replied by amberyard on topic Ritux - Your post treatment counts?
I happy to be above 50k mark, and yes my doctor said the same thing. I'm in the clear to do what ever I want. I don't have to go back and see he unless my count drops below 50k. So I'm not getting another CBC until May or June. Like everyone says you can tell when you counts are low. The only reason I was up set at the last doctor was he was getting kick backs from the pharmaceutical company for my treatment (which most know I don't have insurance) so after $300,000. and he wanted me to get more treatments.?.?. My new doctor is more aware and puts me first unlike the old doctor.

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12 years 10 months ago #31517 by 2Jacks
Replied by 2Jacks on topic Ritux - Your post treatment counts?
Amber - I'm sorry your last Dr. behaved that way. I'm glad you've found a new one.

As for my husband - count today is 30,000. It looks like Ritux was unfortunately a fail for him (or will officially be a fail if he doesn't go up within the next couple of weeks).

So now back to life with ITP. Hopefully he stabilizes above 30 and we can continue on!

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