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Post Rituxan Questions

  • jaysbeaker@verizon.net
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12 years 10 months ago #29580 by jaysbeaker@verizon.net
Post Rituxan Questions was created by jaysbeaker@verizon.net
Hi All,

Many thanks to those who have answered questions for me in the past, and thanks in advance to those who assist with this post.

My wife finished her 4th and final Rituxan treatment on Wednesday, prior to the treatment they didn't take labs. She finished it without incident however, she's completely in the dark now as to what the follow up would be. The week before her 4th treatment her count was 200.

Is it common place to not take labs before an infusion? Also for those who have received Rituxan what was the follow up and how often?

Thanks again, and Happy Holidays to all.

Jay
  • 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 #29582 by Sandi
Replied by Sandi on topic Post Rituxan Questions
Jay:

Every office is different, so there isn't any real protocol on when labs should be done in relation to the infusions. My doctor's office did a CBC prior to each infusion, others may not. It may depend on what the previous count was.

When Rituxan was finished, I knew my counts were up and had a pretty good idea they would stay there, so I think I had labs monthly for a while, then stopped until I noticed symptoms again, which was 13 months after I finished Rituxan.

Did your wife have any treatments other than Rituxan in the last few weeks? If not, it's pretty likely that her rise was due to Rituxan and she'll be good to go for a while. A fast and good response is always a good sign that a remission is starting. I'm surprised that they left her with no instructions, so I'd suggest she call and ask....no hurry though.
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12 years 10 months ago #29587 by jaysbeaker@verizon.net
Replied by jaysbeaker@verizon.net on topic Post Rituxan Questions
Thanks Sandi,

She is taking Prenisone now but that is being tapered since her diagnosis. The awesome part is that in the past with all the IVs she'd bruise fairly easily now, there is almost no bruising at all. All the nurses she's worked with all seem to think they won't be seeing her anytime soon (which I hope), not because they're bad. In fact, they were all awesome at the hospital she was treated at in Boston.

Thanks again

Jay
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12 years 10 months ago #29726 by jaysbeaker@verizon.net
Replied by jaysbeaker@verizon.net on topic Post Rituxan Questions
Update,

So my wife went in for another test one week after her 4th Rituxan infusion and her platelets went down a bit from a high of 200 to 145. She was tapering her prednisone and the Dr. stopped the taper and also wanted her to come back next week for another CBC to make sure it wasn't the taper that was causing the drop.

So far her infusion counts were this:

Week 1 Infusion: 36
Week 2 Infusion: 113
Week 3 Infusion: 200
Week 4 Infusion: No test
Week 5 Post Infusion: 145

Lets hope the trend is eithe neutral or elevates!

Thanks all.

Jay
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12 years 10 months ago #29789 by jaysbeaker@verizon.net
Replied by jaysbeaker@verizon.net on topic Post Rituxan Questions
So, we're now 2 weeks since wife's last rituxan infusion, and while her response was great at first it is slowly starting to go back down. She was at 128 on her latest lab draw today. While 128 is good and safe it's still frustrating as I'm sure you all probably know already. She was as high as 200 not 3 weeks ago. Perhaps we're being impatient. We were hoping this would lead to a somewhat longer remission.
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12 years 10 months ago #29792 by eklein
Replied by eklein on topic Post Rituxan Questions
A count of 128 still counts as a remission.
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
The following user(s) said Thank You: jaysbeaker@verizon.net
  • 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 #29793 by Sandi
Replied by Sandi on topic Post Rituxan Questions
Agreed. Counts do not have to be normal, just above treatment level. That could last a month, three years or forever. Not time to be discouraged just yet.
The following user(s) said Thank You: jaysbeaker@verizon.net
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12 years 10 months ago #29794 by jaysbeaker@verizon.net
Replied by jaysbeaker@verizon.net on topic Post Rituxan Questions
Thanks Eklein, Sandi,

You'd think with all the ups and downs of Diabetes, the hospitalizations for other issues, and now ITP we'd be used to uncertainty. I guess like everyone having a baseline new normal would be nice and hopefully the new normal is nowhere near it was when she went to the hospital originally.

Thanks for the words of encouragement, I'll pass these along. As we were driving in today, I said under my breath, and somewhat related to ITP, its about time we get some good news.

As I've said before, I really appreciate the replies. As a bystander its heartbreaking to see anyone have to deal with any type of autoimmune disease albeit Diabetes, ITP, Lupis etc. I wish everyone the best.
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12 years 10 months ago #29797 by eklein
Replied by eklein on topic Post Rituxan Questions
128 is a normal count. I've seen ranges for normal that start at 130, 140, and 150 and I remembered seeing lower ones too but couldn't find them in a quick scan. But 128 is the same as 130 with the margin of error.
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
  • 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 #29798 by Sandi
Replied by Sandi on topic Post Rituxan Questions
Jay:

I don't think anyone ever gets used to uncertainty. Dealing with autoimmune issues are hard, because there are no cures and it can be an on-going battle. The good thing about ITP is that it is generally not debilitating and for most, can be managed. It's just that some have a harder time than others. It is also pain free and most of the time, life can be fairly normal. If you look at a list of autoimmune disorders, ITP is not as horrible as some of the others can be. When you end up dealing with more than one though, things get harder to handle and juggling becomes exhausting.

It will get easier, just takes time.
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12 years 10 months ago #29858 by jaysbeaker@verizon.net
Replied by jaysbeaker@verizon.net on topic Post Rituxan Questions
Happy Holidays everyone,

New update, wife had a CBC done today and her count was 150! We're excited and hopefully that this is going to be something longer term and trending in a positive direction.

Happy New Year to all.

Jay
The following user(s) said Thank You: kym
  • 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 9 months ago #29915 by dru
Replied by dru on topic Post Rituxan Questions
Jay

That is great news. My counts went up and down quite a bit in the 2-3 months after Rituxin completed August 2011. They stabilized out and I have had normal platelet counts since then.
I am in the Boston area also.


Dru
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