My rituximab/rituxin experience

I was diagnosed with ITP about 5 months ago, although looking back I had been suffering with ITP for at least 2 years before diagnosis.

I was hospitalised and given Prednisolone. I had an awful experience on Prednisolone. The side effects were horrendous and to top it off they had no positive effects on my ITP. In fact my platelet count dropped to 2.

I was offered a course of rituximab/rituxin. I was apprehensive about taking the drug as I had carried out my research and read all about the possible side effects.
I had also been informed it was a chemotherapy drug by my consultant and was obviously concerned about losing my hair and being sick etc. etc.
That is why I am writing this thread because I want to share my experience of rituximab with you if you are contemplating taking it for your ITP as it may alleviate some of your fears.

I had four infusions of rituximab. One infusion a week for four weeks. I had no side effects whatsoever whilst the drug was being infused. I was told that I may suffer flu like symptoms after the infusions, especially the first but I didn't.

Although rituximab is used to treat certain cancers, the dose administered to us ITP sufferers is a lot lower.
I can assure you that I did not lose a single hair or feel remotely sick.

I am one of the lucky ones that it has worked for. My count went from single numbers to 251 over the course of 2 months. I haven't had a single bruise since the treatment and I have re-started taking part in contact sports.

For me the evil treatment was Prednisolone. I am still struggling now to get myself fit and healthy after prednisolone ravaged me.

I do not know why Dr.s try prednisolone first on ITP patients, I can only guess that they do not fully appreciate the damage it can do and it is cheaper to prescribe.

I can only pass on my experience, there will no doubt be others who have had a different experience but hopefully my experience may ease your concerns.

Thanks -

Information and personal experiences are always helpful!

Hi JD1...

After IVIG our hem docs went straight for the pred. The methylpred was the worst as my son had a horrible reaction to it, almost non-existant bloodpressure. After that and still now we're on high dose oral pred everyday. My son's cheeks have popped and he's eating me out of house and home, along with the occasional outburst! He is also on a double dose of another immunosupressant drug called Cellcept.
I think (IMO) that the docs jump straight to the pred because its the "old faithful", its what the all know and here anyways, seems to be the first line treatment method. We've had so many differing opinions from so many different hem docs, they all have their own way of doing things.
But thank you for the info, that may be our next course of treatment since the pred seems to keep him in relatively safe numbers (for now) but they still bounce all over the place, and won't go above double digits. The rituxin probably sounds like a scary drug, and our hospital dosn't like us Googling stuff so its good to know.
I wish you a lifetime of rediculously high numbers!!!!!!!!

JD1 Thanks for Sharing!

JD1, thanks for the information. I am scheduled to start my first Rituxan treatment on Wednesday, and I have been apprehensive about it as you were. Hearing other peoples' experiences helps. Sorry they started you on Pred. My doc put me on Dexamethasone pulses, and I haven't had many adverse side effects, just some weakness after the 4 day pulse is over. Unfortunately the Dexamethasone only worked temporarily, and each time I took it my counts fell back down under 15.

I am also trying Rituxan. On my 3rd dose. No results yet but the experience is way easier than steroids. So far I have been resistant to all treatments (pred, dexa, IVIg) so I am happy to hear of it working for someone. Thanks for the hope.

Theresa

I too was frightened by the potential side effects and sort of obsessed about those 1-3% life threatening side effects. But I went ahead and accepted the treatments and fortunately didn't have any side effects. However I had given up on any positive results after several weeks of platelets hovering between 10-50. But week 9 was the magic number for me and I jumped into the 270's. It was amazing and such a relief and now several weeks later I seem to be settling around 240.

Keep the faith cuz late results do happen.

My experience with prednisone was NASTY! just as bad as yours, but my platelets respond very well with prednisone...after every taper my platelets would drop and drop fast..I did the rituxan while on prednisone..4 treatments, i had no side effects at infusion. But Rituxan has not taken hold yet, im 3 weeks off Rituxan and prednisone..My platelets continue to decrease so i have had IVIG..which my platelets respond well to but, they dont stay up for a long period of time..Now my HEMO wants to take out the SPLEEN, which im totally not interested in..Hope all goes well for you, and who know's maybe i will respond to the rituxan maybe its going to take some time.. I HOPE SO!

Hi, thanks for telling us about your Rituxan experience. The Prednisone and Deximethazone helped at first but each time they tried to lower my dose my platelets would drop drastically. I am on my second dose of Rituxan and responded well at first then my platelet started to drop slowly. I was really encouraged to hear that it took a while once you stopped the doses for your platelets to level and stay steady.

I was wondering if anyone took precautions while taking the Rituxan to prevent infection because of the lower immune response?

Bernadette:

I haven't really noticed that people get sick more often after Rituxan (a handful have reported it, but it could have happened anyway). I didn't. It only targets B cells and T cells which are one type of white cell (lymphocytes) and there is a lot of the immune system still intact. If you're on Prednisone too or have had a splenectomy, it might be a different story.

Thanks for the information. I have lots of questions so hope others are willing to answer and share their experiences.

hi i am on my 3rd treatment of rituximab and for me it always takes 4th treatment and wait. this will be my 4th relapse and it seems when rituxin kicks in i get about 2yrs. no meds. hang in there and be patient and do not lose hope. each time it looked like nothing was going to work and all of a sudden platelets went up. i have had counts in the 400,000 range for 21/2 yrs evrerytime i bounce back. right now my count is at 13,000 but i am only on my 3rd treatment need to give it time. pete

Thanks JD1 & others here for kindly sharing your experiences & information.

Hi thanks for sharing your experience, really helps talkin to other ppl abt it
i was also diagnosed wit ITP abt 6 months back and tried all treatments but they failed and pres also stopped working after a while but my doc wants me to stay on it just to be safe but my platlet counts are very low. they at 2k but i feel no different. I have started rituximab and tom will be my third dose and so far no significant improvement, it is at 7k. How long did it take for ur rituxi to kick in and was it a gradual increase or a sudden one? my doc said tat it takes atleast 3 weeks for rituxi to take effect but i want to be done wit pres and other steroids, i am also currently on danogen but my doc has been taperin it off and wants me to stop it by next week. any advice would be helpful. thanks a lot

I haven't posted for a little while because I wanted to wait for my latest test results. My count was 243,000. I get tested now every 2 months and that was the third result with the count in the same range so I'm very happy.
Obviously the rituximab/rituxin is working for me at the moment.
From reading other posts in this thread I can see that people have burning questions about the treatment. I can only answer these from my personnel experience.
The rituximab started working for me almost immediately. I had a count of 2000 so the results were quite noticeable. I think after the first treatment my count went upto 15,000. Not a high number I know but it was a step in the right direction. My results then gradually went up with each treament.
I haven't noticed any change with my immune system. Before I was diagnosed with I.T.P. I rarely suffered with colds or other illnesses even when the people around me were coughing and spluttering. This hasn't changed since the treatment. We're having a cold winter in England with all the usual bugs going around but (touch wood) I haven't caught anything yet.
The only lifestyle change I have made since being diagnosed is that I no longer take pain killers such as paracetamol or Ibuprofen, as my consultant told me these can exacerbate ITP.
I eat what I want and drink alcohol.
I hope this helps answer some of your questions.
All the best and happy Xmas.

Madrid:

Everyone is different. Some people get a quick rise and some get a slower one. It can take between 3 to 12 weeks to see a response.

My counts went from 3 on the day of my third treatment to 150 on the day of my fourth treatment. That was my experience.

My counts started the big climb on the day of my fourth treatment too.
Erica

thanks for the info. i finished my third dose yesterday and the count was still at 3 so i shall wait longer and see. my doc told me that about 80% of the people respond to it, so am keeping my fingers crossed. Also i am still on danazol (2 x 200 mg tablets a day) and predinsone.My doc told me that he will keep me on the predi until my platelets improve but will taper the danazol off slowly now itself. Any advice on the medication?

Thank you

So i just finished my 4th dose of rituxi and my counts while receiving the 4th dose werer still at 3. I am still going to wait atleast another month or 2 and hope that rituxi kicks in. My doc saw a small blood spot inside my mouth (although i am convinced that i bite myself by mistake) and he has put me back on dexa (80 mg/ day) for 4 days and i really dont want to be on it.
Just checking as to what the nxt options for me are if rituxi does not work. I havent got a spleenectomy done yet, is tat the next logical choice?

What else have you tried?

i was on predi intially and am still on a 10 mg/day of it but my doc feels that i have become resistant to it cause at 60 mg/day also there was no significant change in platelet count. I have tried dexa before and also dapsone with no significant change. I am also on danazol and that also doesnt seem to show any improvement. I still havent gone in for an IVIg or splenectomy. I am not really keen on removing my spleen so basically wat is the next logical choice with the least side effects (i knw tat is shooting for the moon but am still hoping)

You could try Imuran if it is available. Also, the new TPO's are an idea (N-Plate and Promacta).

Hey all so i just got my results from the pathology lab. I called in and checked and they said it was qt 24k, after almost 3 months of being below 7 this is the first time i am seeing double digits. Just keeping my fingers crossed for now cause it has been exactly 8 weeks since my first dose of rituxi and it has taken time to rise. Although I did recently finish a dose of dexa ( thou from my prev experiences, dexa has never boosted my counts) i am still hopefull it is the rituxi . Have a check up with my doc tom, lets see how it goes

How was your counts?

Not sure if it will work - thought I'd share my platelet chart - 2005-2007 was bad. Rituxan started 2007, again in 2008. There are just my general doctor tests, not the hema which were more frequent during the lowest periods.
Erica

Well...just got my first dose of rituxin and I have to admit it was horrible for me. I had every side effect mentioned....chills, headaches, nausea..sure hope the next 3 treatments are nothing like the first.

What pre-meds did you get? The first can be the worst for some people.

Well my doc told me that it most likely the dexa that pulled my counts up and to wait another 2 weeks before we take a call and he has also told me that spleenectomy looks like the best option for me. So i have to wait till the 15th and see what my counts are like, he said that if they rise of sustain at this level then we can wait longer if not to try and start deciding what my next line of treatment is.

@Erica- thanks for the chart but i just wanted to figure out to as to when exactly the first sharp rise happen and also the second sharp rise, as in how many weeks after rituxi? and any idea why the counts suddenly fell again in the middle

sorry erica i read your graph wrong. I am guessing that the sharp rise between 06-07 was ur first rituxi. When did you do your 2nd one and also why cause ur counts aftr 07 ur counts look pretty good