Rituxan - how long before/if you saw results?

I've seen thread posts and read various articles about how long it has taken for Rituxan to kick in for people. My first dose was ten weeks ago and I had the standard four doses (decided this course since I have not responded to prednisone) and there are no signs yet that it is doing anything. I've needed three rounds of IVIG since then as my platelets keep falling below 15 since that first treatment. I get about 2.5 weeks of safety from that -- but not as effective with higher platelet counts as it was three months ago. So I am curious to hear what your individual response time to treatment was (if at all).

I have a follow up with my hematologist in a couple days to map out a new plan. I am still tapering off prednisone and feel extremely fatigued. Trying to keep my spleen and have concerns about the next course of recommended medications to overstimulate platelet production.

I am physically and emotionally exhausted from the past three months. Reading posts here is very helpful, informational and encouraging. Thanks!

Essemess wrote: Trying to keep my spleen and have concerns about the next course of recommended medications to overstimulate platelet production.

What are your concerns? Most people do quite well with the TPO's. They seem to work most of the time with few side effects. These drugs have given people their normal lives back.

Essemess, Response time to Rituxan varies widely, but if it works it is usually within 12 weeks of beginning treatment.

How long were you at 100 mg on prednisone, and how quickly have you tapered? Tapering too quickly can feel really awful and also can make your platelets drop, especially if you have been on prednisone a long time.

TPOs are a much better alternative to splenectomy if they work, and they usually do work. Also, unless you were already vaccinated you will need to be vaccinated against various illnesses before splenectomy, and vaccines are unreliable AT LEAST six months after treatment with Rituxan wipes out your CD-20 B cells. It is much too early to be thinking about splenectomy.

Sandi - My concerns about TPO's are blood clots (mixed with family history) and the unknown long term effects due to how relatively new these are.

Rob - Good question... I have been on prednisone for a little over three months (after trying 100mg to 80 mg with other variables we've been able to determine that it doesn't boost or uphold my platelet counts). I've been tapering 10mg every week until two weeks ago when I got to 30mg and now reducing by 5mg).

I asked this question hoping to hear from others that have gone through Rituxan treatments to learn how they individually started seeing (or not) a change in their platelet counts. I know people's response is so varied ... That it made me curious to hear from others. It has been almost ten weeks since my first dose of Rituxan and my low counts ( under 15) have necessitated two rounds of IVIG since then. I am trying to stay positive -- but some days it is hard.

I had results about 5 weeks from my first Rituxan infusion. In a non-scientific observation and recollection of folks who post here, it seems like there are many who see results in that 5-6 week range and have a big jump to normal counts, and it seems to me there is a second group who see results more lie 2-3 months after first infusion and see a more modest jump to safe but low numbers. That second group it's hard to really say it was the Rituxan but the story seems to have come up the same for multiple people. It's also hard to wait that long if you have really bad counts, so you get a different treatmennt in the meantime and that complicates seeing if rituxan works.
Erica

Esse:

I had a response on the day of my fourth infusion. Counts went from 3k the week before to 150k. I considered that a fast response.

What sort of clotting history does your family have? That would definitely be something to take into account as far as treatment decisions. You might be interested in this also:

www.haematologica.org/content/94/3/443?ijkey=a92f69d450dd728ccf5abbb556f929a0cf3c9005&keytype2=tf_ipsecsha

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

Jumped 50k after first infusion. 6 days later.

I had the same question on Rituxan: how long before people saw results. I did the four-week treatment, starting on January 3 and ending on January 23. My counts at the beginning were in the 10,000s and a few weeks ago I went up to 68,000 but since then I have dropped back down to 30,000. Could the Rituxan still work? My doctor said she remains optimistic, but it has been almost 6 weeks since I finished and 10 since I started. I really just want off the prednisdone and to get to feeling like myself again.

Your doctor is right not to give up hope. Some say four to twelve weeks (from the start) is the normal range, and for some it takes considerably longer.

Sandi quoted an article: The median time between rituximab therapy and response was 14 weeks (range, 4 to 32).
This article is from 2007, but this info has not changed.
www.ncbi.nlm.nih.gov/pmc/articles/PMC2040174/

It is also possible that you will have what is called a "partial response" where your platelets remain above the treatment level of 30k but still below normal.