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Low Dose Rituxan

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12 years 3 months ago #37515 by Kristine
Low Dose Rituxan was created by Kristine
Are low dose rituxan treatments still used for ITP?

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12 years 3 months ago #37532 by eklein
Replied by eklein on topic Low Dose Rituxan
Yes when we can get our doctors to agree to try it. Many of us on the board are in favor of the low dose treatment. My doctor would not agree to low dose but he did agree to stopping at two infusions instead of 4.
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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12 years 3 months ago #37551 by Sandi
Replied by Sandi on topic Low Dose Rituxan

eklein wrote: Yes when we can get our doctors to agree to try it. Many of us on the board are in favor of the low dose treatment. My doctor would not agree to low dose but he did agree to stopping at two infusions instead of 4.
Erica


Ha, that would have been easy to solve even if he hadn't agreed. Just don't show up!
The following user(s) said Thank You: kym

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12 years 3 months ago #37583 by Kristine
Replied by Kristine on topic Low Dose Rituxan
My doctor agreed. I had my first treatment yesterday.

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12 years 2 months ago #37785 by Kristine
Replied by Kristine on topic Low Dose Rituxan
Counts went from 15 to 31 before 2nd Rituxan treatment. We'll see what happens next week. Happy with 31!

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12 years 2 months ago #37900 by Kristine
Replied by Kristine on topic Low Dose Rituxan
Counts were 14 before the 3rd treatment. Not exactly what I was hoping for. 5 years ago my counts went way up after the 1st treatment. I'm trying not to get discouraged.

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12 years 2 months ago #37903 by Katsim
Replied by Katsim on topic Low Dose Rituxan
Hi Kristine - I haven't had rituxan but have read up on it as it might be an option in the coming months. I think I'm right in saying it can take up to 12 weeks to kick in. I realise this happened earlier for you last time, but there is still time. Hope it starts working its magic very soon!
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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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 2 months ago #37906 by Sandi
Replied by Sandi on topic Low Dose Rituxan
Kristine - it's really unusual to have counts go up after the first treatment because of the way Rituxan works. It's not time to get discouraged yet. Did you have any other treatment with it the last time with the first treatment? Anything at all?

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12 years 2 months ago #37910 by Kristine
Replied by Kristine on topic Low Dose Rituxan
I was pretreated with solumedral this time and last time. That's the only thing I can think of that could have risen my counts last time. Maybe the solumedral doesn't work as well for me this go around?

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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 2 months ago #37913 by Sandi
Replied by Sandi on topic Low Dose Rituxan
I have no idea. I was given Solumedrol with Rituxan too and although I respond very well to steroids, did not get any response at all from it. My counts went up before the fourth treatment.

I rarely ever hear of anyone getting Solumedrol as a treatment, so it must not work very well for ITP. It's not even listed as a treatment option.

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12 years 2 months ago #37917 by openhanded
Replied by openhanded on topic Low Dose Rituxan
Solumedrol's other name is methylprednisolone, and it can lead to a response. I got 3 injections a day of it for 3 days in combination with IVIG when I was hospitalized.

Here's some more info if your curious about it's response rates:
www.ncbi.nlm.nih.gov/pubmed/12368690 (in children)
bloodjournal.hematologylibrary.org/content/106/7/2244.fu (in adults)
Diagnosed: August 2013, lowest count 2k.
Treatments: IVIG, Prednisone, transfusions.
Current Count: 233k, 12/23/2013.
Currently: Watching/waiting.

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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 2 months ago #37918 by Sandi
Replied by Sandi on topic Low Dose Rituxan
So it is! It's rarely given though, don't know why. I'd rather have that than IVIG.

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12 years 2 months ago #37927 by Kristine
Replied by Kristine on topic Low Dose Rituxan
My hematologist said the Solumedrol may give me a rise in counts for 2-3 days. I didn't see any spots in my mouth this morning, so I'm guessing my counts are ok for today.

Fingers and toes crossed for Rituxan to work again soon!

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12 years 2 months ago #37978 by tamar
Replied by tamar on topic Low Dose Rituxan
I've had solumedrol twice, but for MS, not ITP. High dose, 3 days straight.

The first time was right after I'd been diagnosed with ITP. I asked for a CBC while getting the tx, and the nurse said that there would be no point as the solumedrol would skew the results (I was so naïve I thought that made sense). 1 week post solumedrol my count was 11K....lowest it had ever been.

The second time I got solumedrol, I had a platelet count every day. During the treatment platelets went up every day, topping out somewhere around 280K if I remember right. 10 days later, my count was in the 20s (it had started around 80K).

I've always considered myself one of the odd ducks for whom steroids are a bad option. Anyway, not sure if this is helpful.

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12 years 2 months ago #38013 by Kristine
Replied by Kristine on topic Low Dose Rituxan
I'm going in tomorrow for a CBC and my last treatment. I have spots all over my mouth but no bruises anywhere. Fingers still crossed.

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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 2 months ago #38014 by Sandi
Replied by Sandi on topic Low Dose Rituxan
Good luck! There is still time for a response. I was at 3k after my third treatment. One week later, I was at 150k and that was earlier than I expected.

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12 years 2 months ago #38035 by yogesh
Replied by yogesh on topic Low Dose Rituxan
Hi,
Today is the 2nd day post we had the first Rituximab infusion (550 mg). As per today evening's report count is less than 10k. Do you have any idea how much time it takes and can we try anything else in between or should wait.

She was on solu medrol and prednisole from last 5 days and before first infusion count was less than 10k and next day of infusion it was 20k and next day (today) count is less than 10k

Thanks,
Yogesh

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12 years 2 months ago #38036 by yogesh
Replied by yogesh on topic Low Dose Rituxan
Hi Sandi, just one more question here as we had first infusion of rituxi day before yesterday and count is less than 10k today that is same as we had 5 days back when she was on solu medrol.
Is this the good decision to go home from hospital with this number and wait for rituxi's results. There is no sign of active bleeding in here from last eight days, even when we took here hospital eight days before at count of 3k

Please suggest.

Thanks, Yogesh

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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 2 months ago #38039 by Sandi
Replied by Sandi on topic Low Dose Rituxan
It's usually not necessary to hospitalize with low counts unless symptoms of bleeding are present. You'd have to make that decision with her doctor though.
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12 years 2 months ago #38068 by yogesh
Replied by yogesh on topic Low Dose Rituxan
Today is the 3rd day post our first Rituximab infusions. As per today morning's report count was 22k, not sure what is working prednisolone, Revolade (which she is still taking) or its rituxi. We discussed with our doctor and got discharged from hospital today after spending 9 days there.

Doctor asked us to get CBC on Monday morning or immediately if there is any red dot on skin or in mouth.

Now getting ready for the second round on coming Monday.

Thanks,
Yogesh

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12 years 2 months ago #38093 by Kristine
Replied by Kristine on topic Low Dose Rituxan
22 is the lucky number of the day for me too. Hoping for a little higher next week but I'm happy going up from 14. All 4 low does treatments done. Going back for a CBC the day before Thanksgiving. If I forget to log on everyone please have a Very Happy Thanksgiving!!!

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12 years 2 months ago #38101 by Winnifred
Replied by Winnifred on topic Low Dose Rituxan
Hey Kristine my lucky number is your old number. "14" Hope you get to enjoy the holidays!

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12 years 2 months ago #38330 by Kristine
Replied by Kristine on topic Low Dose Rituxan
So, I went in to get a CBC a week following my 4th treatment. My count was 26. My hematologist handed me my "walking papers" to go to infusion. I looked at him funny and said I didn't know I was going to infusion anymore! It was the day before Thanksgiving and I needed the day to get stuff done. He says he thought I would just keep getting the "juice" until my platelets came up. I thought that was a little strange.

Anyway, I didn't go to infusion. I'm going in tomorrow for another CBC and maybe another infusion.

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12 years 2 months ago #38331 by Rob16
Replied by Rob16 on topic Low Dose Rituxan
Kristine, I don't see any mention in this thread of the protocol you are using for low dose rituximab. Is it a flat dose of 100 mg?

Of note, I did read in one report that while low dose Rituxan produced similar results as standard dose, the response time was slower.
See last sentence: www.haematologica.org/content/93/6/930.full.pdf

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12 years 1 month ago #38364 by Kristine
Replied by Kristine on topic Low Dose Rituxan
I hope it will still work. I think this is my 5th week and my 5th treatment. My count was 17 this morning. I'll give it a few more weeks and then think about -getting n-plate.

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12 years 1 month ago #38401 by Kristine
Replied by Kristine on topic Low Dose Rituxan
Rob, yes, I'm getting 100 mg doses of Rituxan. Fingers still crossed!

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12 years 1 month ago #38537 by Kristine
Replied by Kristine on topic Low Dose Rituxan
platelets came back at 19 today. My hema and I agreed we didn't think it was working after 6 weeks and 5 treatments We decided to get one last low dose rituxan treatment while we wait for my insurance company to approve me for N-Plate. There's still a chance the rituxan will work but I want to have a back-up plan in place...

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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 1 month ago #38540 by Sandi
Replied by Sandi on topic Low Dose Rituxan
Sounds like a good plan! I hope your counts go up soon!

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12 years 1 month ago #38653 by Kristine
Replied by Kristine on topic Low Dose Rituxan
I cannot believe it! I went in this morning for my CBC and then to meet with my Hema. My platelets came back at 22 so I was expecting to find out if I was approved for N-plate. The doctor tried to send me to infusion for more Rituxan. WTF? I asked him if I was approved and he looked at me like I was a fish. He said I told him I wanted to get up to 12 Rituxan treatments. I said "NO, I said I read it could take up to 12 weeks for Rituxan to take effect and last week was going to be my last treatment". He told me that's not what happened or what he recorded.

I always thought he listened to me. I brought up the fact that we talked about other stuff but he basically walked me out of the office, said we'll let you know what we find out... I have no follow up appointment or order for a CBC.

I just sat in my car and cried. I cannot believe it!

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12 years 1 month ago #38657 by Winnifred
Replied by Winnifred on topic Low Dose Rituxan
I am so sorry the doctor didn't listen!

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