Rituximab

I was diagnosed with ITP in 2005. Platelet count is on the average in the 50s. There have been a few occasions where it dropped to 20 and I was put on a course of Prednisone, by my hematologist to address the drop. As I am an active dressage rider, my hematologist recently recommended that I try Rituximab as a course of treatment. He is confident that it would put my ITP into remission. The odd thing is that in 2006, I was sent to UCSF to see one of their automimmune specialists for a recommendation. He recommended either Prednisone or Rituximab as treatment options. My hematologist did not concur with the Rituximab option in that there were cases where brain infections caused fatalities. I was wondering if anyone has any feedback surrounding the side effects and benefits (i.e putting ITP into remission) which will help me make a decision as to whether the Rituximab option should be pursued. Appreciate any feedback you may have

Hi there AnnG

I have been diagnosed with ITP since 1994 and had splenectomy. My usual course of treatment when platelets dropped would be the prednisolone and IVIG.

This year things have gone a little different because the new consultant thought my platelets responded to pred alone. They did but only for a time and then they drop.

In July I had a five day course of ivig and they initially were going up. It got me out to do my half hour teach;) But the following week they were down to 5. Straight back onto the pred and went up to 346 ish and thankfully they continued with the previously discussed option of Rituximab. I have now had 3 doses of it. Last one next week I believe and down to 40mg of pred.

I was warned not to get pregnant in the year of Rituximab. Am 43 anyway but never had any interest in getting pregnant so that didn't worry me. I was warned of infection and have read more on here under the treatments section. I was warned of infection but not which ones.

I had a very bad case of septic shock - stage worse than septicemia and very lucky to be here and only damaged my hearing and affected my confidence health wise. I read with my heart in my mouth that if by some unlucky chance I contracted the infection with Rituximab then the septic shock would be a practice run so to speak. But reading more I see I think it quoted only 0.3% contracted that and those patients had severly comprimised immune issues. True I don't have a spleen so if I got that, it be it for me. I bit the bullet and told myself I cross the road every day of my life nearly. Statistics of fatalities of people walking/crossing the road is probably just as high if not higher and we do that continually. That is my outlook to it all...

Infections. Everything has risks and actually I have had more side effects from the IVIG than I have so far with Rituximab. I would get shivery goosebumps quite quick and sometimes be anemic enough to need blood transfusions. Rituximab - first week just plain tired and next day life was a bit of a drag. Following week my Blood pressure and pulse kept dropping but they didn't need to do anything accept deep breathing. This week my temp was up - before starting for it was up at 37.4 and only dropped to 36.2 the once. I didn't feel it at all...

What happens in the near future months who can tell? But what happens in life in future months who can tell? Some people do worry about it and am one of those who leave the worrying to others. All worrying does to me is make me feel depressed so I don't do it. I know some people that achieve a sense of purpose for worrying. That don't work for me. So I manage my life by jumping in with both feet and usually something sorts itself out somewhere along the line. Seize the day and take each day as it comes stuff though I know that approach don't work with everyone. I simply am not a worrier so it be wrong of my character to worry about this course of treatment.

Sadly I dont know my platelet count but I understand from reading on here the platelet count is almost irrelevent whilst on rituximab. It what happens afterwards that is important. It can take a while to respond. Plus my count was very good at the beginning of treatment due to the steroids alone.

I quite happily agreed to the treatment because like I say, crossing the road is just as dangerous and yet we do that most days. Infections, Yes there is a risk but life is a risk. And it don't mean that everyone experiences the infections. They have to warn us because of the high risk not because we are all going to be infected because we are not all infected. I have been okay so far. From what I have read on here, no one has come back saying they have had rituximab and their cold has turned into flue. That doesn't mean to say that hasn't happed for them - just not reported it. But given the amount that is reported on here it be extremely unfortuate if you were the one to have the severe infection but I cannot promise you that you wont be the one sadly...

I don't know what your 'job' involves as a rider? It is the first time I have had rituximab and remission isnt a term that is used by my department - thankfully. IVIG has always worked in the past. I know my platelets are up because I haven't got the usual signs they are down but that is all I can say there. I hope you will have a good read because there is lots of stuff on here via rituximab

Welcome to the boards. That's great that you haven't had to treat very often. I was diagnosed in 2006. I was given Rituxan (that's the trade name for rituximab) in October 2006. I just came out of a 4.5 year remission around May of this year. That means that I had normal platelets and no treatment for 4.5 years. When I became convinced that my bruises were again ITP, I had a cbc done. Yep, my platelets were back to 17k. So I was quite happy to do Rituxan again. I finished my 4 weekly course on Aug 4th. My platelets are back up to 176k. There is another lady, Dru, who had the exact same experience. We are somehow following each other!

During my 4.5 remission, I experienced no more than the usual sicknesses. The brain infections that occurred that your Dr told you about happened in patients that had cancer and a lot of other issues. They were severely immune compromised due to a lot of other drugs and treatments that they had undergone.

A number of people have found Rituxan to be helpful for them. If you look at the old discussion board there is a "scoreboard" for Rituxan and people wrote in if it helped them or not.

Not everyone has such a quick response as I have, but I think the statistics for those with ITP who were helped is around 60%.

The first infusion can be a little hard, but the nurses pre-treat you and watch you carefully. The next day I was a little tired, but on the second day I was always fine. It has been for me so much better than prednisone or any other treatment I have tried.

You can read my whole story under Treatment -General and the topic is :Repeating Rituxan after remission.

Good luck, and let us know what happens!

I wish I had an answer for you. I just wanted to give support and understanding for a fellow dressage rider. I have not been on a horse for three weeks and was set to return this week. However, I just found petechaie on my stomach.

I have been with ITP for seven years. My usual course of treatment has been pred and WinRHO. My count did not respond to the pred this time so we went back to the the WinRHO which got me up to 256K, but it looks like it didn't work this time. Dr. told me that he was going to do Rituxan next.

At this point except taking out the spleen, I don't know what else my options are. Usually he won't let me ride unless my counts have been steady above 60K for two weeks (even though I tell him I am more clumsy walking than riding).

I'll cross our fingers for both of us. First time that the steroids AND WinRHO didn't work.

The infection that he is referring to is called PML. It is very rare.

www.ninds.nih.gov/disorders/pml/pml.htm

I am a 70 year old male. I was diagnosed with ITP a year ago through a routing blood test. My count was 10K at the time of the test and 5K when I got to the Doctor 2 days later.

Prednisone worked fairly well for several months but finally the Doc. recommended a splenoctomy. That did not seem to make a lot of improvement. Then he recommended rituxon. I had four IV injections, one week apart. My count has gone up to over 100K after the injections and my Doctor has taken me off all medications.

Of course, one cannot say that the improvement was the result of the rituxon, the splenoctomy, or a combination of both.... or if the count will stay satisfactorily high.

My advise is to listen to your Doctor and take his/her recommendations.

Joe

I was dx in 2004. Prednisone was first treatment. Counts raised a bit but did not stay as dose was tapered. Two Platelet transfussions with not much luck. First round of Rituxin, spring of 2007 Took a few months after the last treatment before my counts increased. Counts bounced around quite a bit. Second round of Rituxin, Fall of 2009. Counts as low as 2k. 2yrs now with counts within normal range. I do not know whatelse this drug has done inside of me. I just do not feel the same. Mabey a combo of ITP/Rituxin.