Rituximab

[Morgan]

Hi I am going into hospital for my first dose on monday - can anyone let me know about their experiences and any side effects they have had or successes. Thank you Heather

[brandy29]

HI Heather::; i HAD RETUXIMAB 2 YEARS AGO, . iT DIDN`T RAISE MY PLATELETS THAT MUCH, NO SIDE EFFECTS. . iT DID HELP THE ARTHRITIS IN MY KNEES, AND I`VE HAD GOOD KNEES SINCE. , ALL THE BEST HEATHER.

[Morgan in reply to brandy29]

Thank you Brandy, maybe it will get rid of all my aches and pains! Best wishes

[AnthonyHeard Administrator ITP Support Association]

Hello Morgan, I had Rituximab in August 2010 and it has given me remission ever since then.

The first thing to say about Rituximab is that it can often take a while to see the platelet count rise in response to it so do not be surprised if the platelet count does not go up straight away. My specialist advised me that it can sometimes take 2 to 3 months before the platelet count responds. Luckily in my case I responded to it within a week as my platelets went up from 34 to 119 within 7 days of my first dose.

As you probably know the treatment is given in 4 doses with a gap of a week between each dose. The dose is given very slowly as they keep a careful watch on any reaction you may have so do not be surprised that the dose can take a while to deliver. My first dose took about 8 hours as I got quite a sore throat about 1 hour into that first dose and they stopped the treatment for an hour to make sure I had no other reaction.

Anyway, I had no other reaction so the 2nd dose a week later was delivered a bit quicker in 6 hours and the 3rd and 4th doses were about 5 hours each.

Rituximab suppresses your immune system so you will find that you are vulnerable to colds, flus, viruses for 6 months after the treatment so do look after yourself and avoid anyone with colds etc, make sure you wash your hands regularly etc...

Rituximab like all treatments works well for some people like me, but not so well for others. We are all different but in my case I have had 2 years 8 months so far without any medication since Rituximab.

If you respond well to it you can always be given a top up dose of it if you should lapse later on. In my case that is what my specialist will do if my platelet count does lapse.

The only side effects I got was that I was very tired after each treatment for a couple of days and I did get headaches but that might be because I was being taken off the Prednisolone steroid which I had previously been on over 4 years on and off.

Anyway, hope all this helps and best wishes. Let us know how you get on.

Anthony

[virginiabranscom in reply to AnthonyHeard]

Anthony, this is very helpful. I've just missed starting Rituximab as my platelets suddenly went up from 33 to 58, but my hematologist is keeping it as a treatment option if counts plunge again. Thank you, as always, for sharing your story.

[Morgan in reply to AnthonyHeard]

Thank you Anthony, I didn't know there were four doses! As far as I know I was just having the one, 400 mg infusion to see if it would boost my platelets and if successful in 2 months followed by an asperin prophylaxis to counteract the sticky blood. It sounds as though I should forget about going to work the next day.

Thank you I will let you know how I get on. Heather

[SoporRose]

Heather,

My experience was much like Anthony's. The doctor warned me that I should have someone to take me home after the first infusion and that turned out to be very good advice. Here in the U.S. it's common to be given a hefty dose of anti-histamine to prevent allergic reactions to the Rituximab. I was really loopy after that first round. The other three infusions didn't knock me out the same way, but I too got very tired from the Rituxan — and the tiredness has never gone away. However, I have had lovely counts — some over 200k — for two years and three months now (I'm due for another count next week).

I hope this works for you. Please let us know how it goes.

Ruth

[Morgan in reply to SoporRose]

Hi Ruth, that was 2 years ago now and I went to work the next day, I had no bad reaction, in fact it improved my aching joints! However, the platelets only rose a little. Since then I have been on aspirin and off it, my platelets improved to 80 and have now gone down to about 26, so if they are still going down next visit (Oct) I was told they were considering N plate so fingers crossed the platelets have risen, I prefer being drug free.

Heather

[SoporRose in reply to Morgan]

Finger crossed for you here too!

[Morgan in reply to SoporRose]

Have just come back from hospital today and they have risen to 85 - am so happy not to have any treatment !!

[SoporRose in reply to Morgan]

Congratulations! May your counts never be lower than that. Yea!

[aprilskies in reply to SoporRose]

Hi SoporRose! My experience with rituximab was similar to yours it really made me very tired and I still am extremely tired 6 months after the treatment. They did discover I had low iron counts 3 months ago and I had iron tablets which helped a little. However my count has stayed up last at 136 which is good news! Hope your count was good too!

The most difficult thing is managing the tiredness and going to work, I work 3 hours a day in a kitchen and have to have a lie down every day afterwards!

Hope you are doing well. Take care everyone!

[SoporRose in reply to aprilskies]

Dear Aprilskies,

My count was also over 100K. I'm not surprised that your three-hour kitchen-stints knock you out, but I'm sorry ti have to go th rough the roller-coaster.

My doctor told me Rituxan stays in the system for about six months, and he thought after that I would regain some of my energy. I didn't, but you may find yourself bouncing back a bit soon. I hope so. What worries me is the thought of the next time I need the infusions. If the medicine wears me down as much again, I may never get out of bed.

[aprilskies]

It's about 5 months since I finished rituximab so I hope there is an improvement soon thanks! I though same if I had to have treatment again don't know if I could do it. Had to have couple of months off first time. Told work I would be in inbetween the 4 treatments as doc said I would be ok to do so, but after 1st session I realised that would be impossible as could hardly get out if bed!