What to expect with Rituxin????

Mac:

You can't really help someone who doesn't want to be helped. People have to come to terms with this in their own time. Getting angry about it isn't going to help at all. There comes a time when you have to pull yourself up by the bootstraps and get on with it. Things could be always be worse. She might want to consider therapy; it could help tremendously. It's sad to me when people let ITP rule their lives. If she would even come here, she would truly begin to feel better about it all.

How are her counts, do you know?

Okay, I am off of my soapbox and sorry, but I don't tend to sugar coat things. I don't know what more I can tell you that hasn't already been said. I think the best thing for her to know is that there is hope. Rituxan has given remissions to many patients. The infusions themselves are usually well tolerated and most people have no side effects. Maybe I'm weird, but I thought of infusion day as a day off of work where I could relax and nap. No, I wasn't happy that I was there, but I tried to make the best of it.

Starting a new thread might be helpful for you.

Hi Sandi,
Your posts through this thread were so helpful to me. I wish she would come here. Her count have been bouncing around. They were at 50 went to 91 and are now 46. This is with no current treatment. She has been off steroids for awhile.

Most people would do nothing with counts like that. Not treating, especially with counts over 30, is a viable option if there is no bleeding. Some people prefer to watch and wait rather than go through treatments and subject their bodies to these harsh meds. She does have a choice here and maybe a second opinion would be a good idea.

I wish you could get her to come here. We'd love to have her join the group.

She has nose bleeds. I'm wondering if that is why they are treating?? They have been in a watch and wait mode for a couple months. I'm going to give her time to digest and talk about the site again. Thank you for taking the time to respond.

Nose bleeds aren't a major problem as long as they don't last long and can be stopped.

Good luck with your family member, I hope she gets the help that she needs and yes, reading posts here should help. It's nice that you are trying to help.

Again thank you for all your help and sharing your knowledge. This forum has calmed by fears so much. I'm hoping with a little time she will be willing to come on here. I've gained so much hope and insight from all I have read.

I'll add to this. While you can read that Rituxin is a bit of a crap shoot as to if it works for many people it's a non-event getting the treatments. It made me tired the day of the injections but that was the Benadryl and not the Rituxin to blame. Very easy.

For me two treatments of Rituxin has led to 15 months of full remission meaning normal platelet counts. This was after messing around with steroids for nearly a year. I'm lucky I know but if you read the reports around 40% or more (depends which study you read) of those getting Rituxin have a durable remission from it so it's worth trying. It's a pretty common drug used by a lot of immune disorders so I would not worry terribly about trying it as long as the person is otherwise reasonably healthy.

Nope it's a CD20 antibody. It targets the marker on B cells only. Originally designed to combat indolent follicular cd20+ lymphoma. Over the years they have realized that reducing the B cells also reduced the amount of autoantibodies your body makes. So it works for some autoimmune disease.

I had ITP for years and never had to treat. I've always stayed between 50-80k. I started Rituxan two weeks ago for cd20+ lymphoid aggregates in my marrow. The pleasant side effect for me was for the first time in 15 years I had a normal platelet count. I jumped 50k in 6 days.

The treatment itself isn't that bad. My first was done over 7-8 hours and I got a lot of bone pain and a week of the flu. Most likely caused by cells being killed in my marrow. Second treatment two days ago was a breeze.

Hope this helps. Best of luck.

Jparker82 wrote: Over the years they have realized that reducing the B cells also reduced the amount of autoantibodies your body makes. So it works for some autoimmune disease.

I haven't heard it put that simply before, but it makes sense. Of course, the details are far more complicated than that, which is why reducing B cells only sometimes works.

Presumably it only sometimes works because some people have T-cell mediated ITP rather than antibody mediated ITP so ridding the body of B cells is not the answer for them.

I do remember articles years ago about Rituxan also affecting T cells though. I'll have to look for it.

Sandi wrote: I do remember articles years ago about Rituxan also affecting T cells though. I'll have to look for it.

Hi Sandi, I think those articles exist. It was also relatively recently that John Semple identified that ITP might be a t-cell mediated condition...it was assumed to be b-cell mediated before that. The whole t-cell possibility opened up a new area of research for ITP treatments.

Here it is. I didn't realize it came out this long ago (2007).

Just when we're comfortable thinking that Rituximab's efficacy in idiopathic thrombocytopenic purpura (ITP) is due directly to B-cell depletion, along comes a paper that challenges the notion. It appears that B-cell depletion really affects abnormal T-cell subsets and only these changes correlate with increased platelet counts; this may change the game of how we view therapeutic design in ITP.

The efficacy of a B-cell–depleting therapy, despite the presence of autoreactive T cells, led Stasi and colleagues in this issue to demonstrate that the therapeutic efficacy of rituximab is actually due to normalizing abnormal autoreactive T-cell responses in patients with ITP.


www.bloodjournal.org/content/110/8/2784

Funny thing: TPOs do too:

www.bloodjournal.org/content/116/22/4388?sso-checked=true
ITP: Tregs come to the rescue
In this issue of Blood, Bao et al report an increase in regulatory T-cell activity in patients with ITP treated with thrombopoietin receptor (TPO-R) agonists. This finding implies that TPO-R agonists may have an unexpected immune-regulatory activity. If this is indeed the case, the mechanism by which TPO-R agonists could perform such a function is currently unclear.

Dataset: The cellular pathophysiology of immune thrombocytopenia
J W Semple

ABSTRACT: Background Immune thrombocytopenia (ITP) is a bleeding disorder with circulating platelet counts of <100 9 109/l, in the absence of any other resultant cause or disorder. This disease is primarily mediated by two major immune mechanisms. The predominant response occurs when immunoglobulin G (IgG) autoanti-bodies are produced against platelet self-antigens resulting in platelet opsonization and increased Fc-receptor-mediated phagocytosis and destruction by macrophages within the spleen. In addition, these IgG autoantibodies can also mediate megakaryocyte inhibition/destruction within the bone marrow.

The second immune response concerns T-cell-mediated platelet destruction in the periphery and megakaryocyte destruction/inhibition in the bone marrow. One or both of these mechanisms of immune mediated thrombocytopenia may lead to reduced levels of platelets. Results It appears that ITP is associated with many varied defects at the level of antigen presenting cells, T cells and B cells. The primary defect in active disease appears to be an expansion of pro-inflammatory Th17 cells with a concomitant deficiency in T and B regulatory cells. Conclusion This article will summarize the role of cellular autoreactive mecha-nisms associated with ITP to gain a greater understanding of the pathophysiology of this autoimmune bleeding disorder.

Only demigods can really understand all of this immunology. The more I learn, the more complicated and intricate it all becomes. Quantum mechanics is simple by comparison.

Rob, I agree. However, I used to read enough of this stuff (and read it many, many times) that I sort of understand some of what I posted.

PS I think John Semple is one of the ITP demigods.

EDIT: I used to visit this webpage everyone once in a while to see if he'd update it: www.angelfire.com/ut/johnsnotes/

It was funny on Wednesday. When I asked my Hema how/why? Response was..... It's really not known why Rituxan works so well on ITP. Like I stated it was just a bonus for me. ITP has never been a real concern. I never go under 50k and I've never treated it(15+years). They are trying to wipe out the CD20+ lymphoid aggregates in my marrow and reduce my nodes and spleen.

Correction even funnier: He doesn't know why Rituxan works for ITP. Apparently, some people do.

I first had ITP in 2009 with platelet counts of 2000. Prednisone nearly killed me. Rituxin brought my platelets up over a period of eight months into the 100 range. By year two, I was in the 200 range and stayed there until December of 2014, five and a half years. My platelets dropped to 8000 at that point. I tried Promacta, and initially had success with platelets rising to slightly over 200000. In a month, my platelets crashed to 3000, but I would highly recommend Promacta as it seems a marvel for a lot of people, has few side effects, is convenient, and since it is in pill form, it might be more readily covered by drug insurance.

When the Promacta stopped working for me, I decided to go the Rituxin route again since I had good results previously. My experience on both occasions was similar to what others experienced and described here. I got the Bendryl infusion and Tyelanol. The first day was long because I had a minor reaction and got chills so the infusion had to be stopped for an hour before being restarted at a lower dose. I didn't get sleepy. I read most of the time. Magazines are easier to hold. I had no reaction on subsequent dosages.

My problem is that I have had no positive change after three infusions, which is alarming my hematologist since I can't take steroids to do a short term platelet bump (which didn't happen in my case previously anyway). I have extensive petechia and bruising, some minor nose bleeds, so I'm going to try to slow the process down to see if the Rituxin will push my platelet counts up over the next four to eight weeks since that seems consistent with response timelines many people mention here.

I might try Promacta again to see if it will carry me through that period, but then, of course, it will be hard to tell which drug started the recovery process. I'm also inclined to keep Promacta in reserve in case I need to have surgery, especially since it only worked for a short time for me. But in any case, I would like to confirm that I am another person who had a simple, fairly pleasant experience with it twice. Still, it is a cannon, especially compared to the finer tools of Promacta and Nplate. I would try at least one of those first.