ITP Awareness Month: My rituximab experience

This guest post was written by Anthony Heard, ITP patient and volunteer, as part of my ITP Awareness Month Iceless Challenge. If you want to share your own ITP story (or a poem or drawing?), please contact me.

I was diagnosed with ITP in July 2006. After four years on and off prednisolone, a quick round of nausea-inducing azathioprine, and a memorable Christmas with shingles in 2009, I had rituximab treatment in August 2010. Until April 2013 I entered remission. However, in April my ITP returned so I had a further round of rituximab.

In this article, I relate my rituximab experience to give an insight into what happened to me, what I understand it does, and what the results have been so far.

Firstly, what happened to me during my rituximab treatment is my own experience and obviously, we do not all react in the same way to rituximab or any other ITP treatment. This is what happened to me and it is my understanding of how it works and what it does, as explained to me by my specialist. I hope that it helps others who have had or are being asked to consider it as an option.

Rituximab (UK), Rituxan (USA), and often called MabThera, is a chimerical monoclonal antibody (a very specific antibody for a single target) designed to act against the protein CD20 found on the surface of immune system B cells. Rituximab destroys B Cells and is used to treat diseases/conditions characterised by excessive numbers of B cells, overactive or dysfunctional B Cells (including Lymphomas, Leukemia, organ transplant rejection, or autoimmune diseases). It destroys any malignant and normal B cells that have the CD20 protein attached to them, as it binds to the CD20 protein on the B cells. It is the protein CD20 which once attached to the B Cells is then responsible for Platelets being destroyed in the spleen. The actual purpose of the CD20 protein itself is unknown.

Anyway, rituximab is an antibody developed in mice against human cells and it has been used “off label” in treating ITP as well as rheumatoid arthritis, multiple sclerosis, Evans Syndrome, chronic fatigue syndrome, systemic lupus erythematosus, and in the management of kidney transplant recipients. It is given in four intravenous doses, with a week between each dose. It can take up to two to three months for the platelet count to respond to rituximab.

Luckily, I responded within a week of my first dose both times I had it, but we are all different. Sadly, some people will not see a positive platelet count response at all.

When I had rituximab in July 2010, an hour into the first dosage I got a very sore throat which is a common reaction so they stopped for an hour to make sure I did not get any further adverse reaction. I did not, so they resumed, but it meant my first dosage took about six hours. As if by magic the same thing happened to me when I was given my first dosage in May this year. However, I also got a rash right in the centre of my chest. Again the infusion was stopped for an hour, I was given a bit more steroids and I got no further adverse reaction.

The next three doses went much quicker, albeit with the second dosage they were very watchful in case I got the scratchy throat again, which I did not. That second dosage took five hours and the third and fourth doses were about three to four hours each.

Before giving me rituximab, I was given pre-meds about half an hour beforehand. The pre-meds are to offset any potential reaction you may have and they are (1) an antihistamine, usually Piriton, (2) paracetamol, and (3) a steroid, usually cortisone.

Like any treatment, there are several potential side effects/reactions to rituximab. But the treatment is monitored very carefully and is given very slowly, to make sure that if you do have any reaction they can spot it quickly. I understand it is standard practice for them to check your temperature, blood pressure, and heart rate every half an hour, and this is what they did with me.

In 2010, I responded positively within a week of my first rituximab dose and my count went up from 34 to 119*. A week after that I got a rotten cold and my second dose had to be delayed for an extra week. Like with prednisolone, the rituximab does suppress the immune system, so you will be vulnerable to colds/flu/infections/viruses for about six months post-treatment. Make sure that you eat healthily and get plenty of rest to help your system as much as possible.

My first encounter with rituximab gave me two years and eight months without any further medication, and my count stayed over 100 from July 2010 until April 2013, when it lapsed to 38, so I had rituximab again in May 2013.

The good news is that the dosage given now is much less than it was in 2010. The dosage in 2010 was 375mg/m2 and it is now 100mg/m2.

In mid-May 2013, as in 2010, a week after my first dosage my count went up, this time from 27 to 38. I finished my treatment on June 4th when my count had gone up to 58. At my check-up on June 19th, my count was 78 and by July 24th it had gone up to 101. So we are hopeful it will continue to respond as well as it did when I had Rituximab in 2010.

My latest count was 134 in late June 2014, so I am cautiously optimistic and keeping my fingers crossed!

A note from Just Frances:

Thank you, Anthony, for sharing your story! It really helps to have personal experiences out there for other ITPers to find and share! You can read my ITP diagnosis story here.

Here are some great resources for others to learn more about ITP. From these links, you’ll also find ways to donate or to urge your representatives to fund research. (And don’t forget that little things like just donating blood can help, too!)

* A normal platelet count is 150-400 x 109/L which equates to 150,000-400,000. However, the counts are generally quoted without the extra zeros. Hence, a count of 50,000 is referred to as 50.

[Image note: If you’re wondering what you’re looking at, this is meant to illustrate life with ITP, and was my submission for the 2013 Rare Disease Day competition. The red in the lower-left corner represents blood and platelets, the line of red dots represents petechiae, the blue and purple swirls represent bruising, and the colourful swirls leading away from the bruising represents a bright, bold, and live-able life. I know; what a load of rubbish!]

4 Replies to “ITP Awareness Month: My rituximab experience”

  1. Make the decision today at 11:00 between Rituxan and Promacta. Prayed this morning for God’s help to make the right choice. Thank you for the post.

  2. Thank you for sharing your experiences with ITP and Rituxan. I was first diagnosed/hospitalized with ITP (at age 29) almost a year ago to the date. (My platelets fell down to 14,000 and rose to 88,000 inpatient with initial Decadron therapy.) Relapsed after the initial Decadron trial during Christmas 2015, then after 4 months of high-dose Prednisone therapy. Bone marrow biopsy in May 2016 was non-malignant, thank goodness. I started 4 rounds of Rituxan (once a week for 4 weeks) in May and June of 2016 and have so far had platelet counts above 100,000 for the last several months. It is so hard to know what it is like to have a rare, incurable disease until you yourself have to go through it, but it is a blessing to know that there are others out there who are willing and able to share their experiences. I wish you the best with your “ITP journey!”

    1. Hi, Liz! Thank you for your comment. It’s always nice to hear how others are getting on with the various treatments available for ITP. How great that you’ve had a fairly decent and stable count for these past few months, too. Mine is always all over the place, but it’s almost always high enough to live a fairly active life!

      All my best to you!!

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