My sad Rituximab story

Here's another one for the books, if anyone's keeping a tally on Rituximab reactions -

1st infusion - slight chest pressure reaction, med stopped, started again no problem.

2nd infusion - no problem

3rd infusion - slight burning at infusion site - med stopped, saline flush, warm compress, started again no problem.

3 days after 3rd infusion - woke up with slight pain in joint of ring finger. By the end of the day, both wrists and hands in severe pain - had to concentrate to straighten them out - incredibly painful and scary - was sure I would have no use of my hands by morning. Felt feverish but husband said I was not at all hot. I had done my homework on serum sickness - I didn't have any breathing problems or chills or hives or anything like that.
Next morning - much better - got more and more better throughout the day but the following morning, all pain gone with no interventions except Tylenol.
Told Hemo about it and he said it sounded like a side effect of the Rituxan and the plan was to lower the dose for the last infusion.

4th infusion - About an hour into it, severe burning in the chest - med stopped, burning subsided but then came all the pressure in my chest - didn't really have trouble breathing though, just pressure. Blood pressure taken, oxygen given, EKG done - Needless to day, Hemo directed to ditch the drug and told me I shouldn't have it again.

Still feeling some burning in my chest off and on this evening. No other symptoms. Hope it goes away.

The good news is that I did see a response in this week's labs - platelets doubled from 20's to 40's.
Hopefully they will continue to rise.

Probably wouldn't classify as serum sickness, maybe just an allergy in gereral.

I'm a little bummed - but if I didn't see a rise in my count yet, I'd be a lot bummed - so I guess it's okay.

That's my sad Rituximab story - maybe it will eventually have a happy ending though.

any updates?

Michelle, so sorry you've had a reaction. I've unresponsive to most Rx, but splenectomy did handle my ITP for almost 10 years. I had my 1st dose of Rituxan last Friday without event, but 3 more to go. My last CBC = 13,000 (10,000 a week ago) and I'll test another this morning before an IVIg (which worked well for 2 weeks back in 2001).

I'll be praying your counts increase and and you WILL have a happy ending!

Yes, of course, there is always an update!
So here I am about four weeks out from the last treatment and I am sitting in the 130's.
I have risen every week and I am hoping that I continue to go up, but I would also be happy if I stayed here. First time in a year with no bruises.

What I am wondering though is - it seems from what I have gathered by reading the boards, if people have a fairly good response, they are usually in remission for several months.
Also, there are some people who get no response at all.

Since I have had a pretty good (in my opinion) response, would it be safe for me to make some travel plans three months out? I don't want to purchase plane tickets and pay for the hotel and then have to cancel. I tried this trip earlier but Hemo wouldn't clear me to go so far away because my numbers were so low so I had to cancel.

Has anyone experienced a good, but very short-lived response to Rituximab/Rituxan?

And also, I am still getting random red spots on the inside of my cheek, even with the high counts. Weird.

Hi, Im Christine a mother of a teenage daughter who has ITP her story started two years ago when i noticed the red spots on her chest...made an appointment with her ped. blood test confirmed the doctors suspicion..platel count was 5,000. We were sent to be addmitted and when we got to the hospital she was at 1,000. First treatment IVIG..after the second treatment she had a migraine and no change in platlet count so that was stopped...next treatment was steriods..against my better judgement..three days no change and 14 lbs heavier....that was stopped...i was given a choice ont he next treatment..take the spleen out or this new treatment Rituximab...after reading the possible side affects and know what a surgery without any platlets would do...i choose Rituximab...after the fourth treatment..250,000 two years and allthough her platelts stay on the lower side 121..135...even 63,000 once she has never completely lost them again...she has had some other complication but nothing life threatening...if you have any other questions please feel free to contact me

Thanks. Christine, this info is very helpful. I too have a teenage daughter with ITP and have been struggling with Rituxan as a treatment. Right now she is doing well with a different treatment that the dr. suggested. But we will try Rituxan if this fails so I just may be contacting you (but I hope I won't have to)
Shauna, mom of Emmy

I did the Rituxan regimen and eventually acheived counts approaching 140k. However the count slowly dropped over the next 9 months into the 60k range. The following year, like you, I was planning a 3=week trip to Europe and decided on a Rituxan re-treatment. However the re-treatment was a TOTAL failure, i.e., absolutely no increase in the platelet count. I ended up taking Prednisone during the duration of the trip. On the other extreme, there are some on this site that have had 'remissions' for 5-6 years....and there is no way to tell what will or will not be successful over the long run.

See, that's the thing - even the people who didn't quite achieve a full response from Rituximab seem to have stayed in a "safe" zone at least for a few months.
Untreated, I live around 10-20. Even if my current counts don't hold, if I could just stay in a safe range i.e. over 30, I would be a happy camper.

Back to the lab tomorrow!

well i will not let my daughter take steriods for ITP again..if she looses her platlets again we will do Rituximab. hearing about all the ITP relapses scares me honestly. Her hemo told me that he believes that she will because she was so resilient to the medication. im just praying he is wrong. He also told us that he thinks this is an underline for something else. that later on in life she will be diagnosed with something else like lupus or something in the auto immune disease family. praying he is wrong

SMS:

Why do you think he said that? Is there any reason to think your daughter has anything else going on?

not sure why he said that but he said i think he took into consideration his experence anr her case. he is a very good hemo and respect him. but i try not to ponder on the "maybe". I just pray he is wrong.

I had 11/2 years with my first treatment. The second (last Oct) I had some similar reactions, shortness of breath, tightness in chest, chills. Med stopped for treatment of reaction resumed about an hour later, slower rate with no problems. Numbers have been great, mid 200k.
Take Care
Dean

Does anyone know what the buring in the chest is? I had it too, usually the evening of the infusion, and felt slightly short of breath like I wanted to lean forward to breathe. It went away by morning.
Erica

You know, the weird thing is that I still continue to get that burning sensation in my chest every once in awhile even four weeks after treatment.

It comes for a few hours and then goes away. I am starting to wonder if I developed slight asthma or sensitivity to something that I can't figure out.
I even considered the possibility of panic attacks - but I don't feel stressed and it comes on randomly. I've never had a panic attack before but I hear that's how it makes you feel.
I've never had breathing issues in my whole life so it's very strange to me.

do any of you have ports? or did you take the treatment through a needle in your arm? Just curious.

I had it through my arm. No port.

Do you have any theories about it??

As far as travel goes, my son with chronic itp has been allowed to travel (fly) with counts below 10,000. We even took him to Asia for 2 weeks. His count when we got home from taht trip was 17,000. He was on Prednisone for the entire trip but it did nothing. After that we just traveled without steroids, with his doctor's approval. Go ahead and plan your trip--just do not book the skydiving excursion!

Well I had waited a couple of weeks just to see what was going to happen - I'm going up and down in the 120's so I am very happy with that and my Hemo gave the green light as well, so I'm planning the trip.

Hemo had said I shouldn't go over the summer when I was at 20 - so it's interesting to hear about people travelling with much lower numbers.

I've always wondered what was a "safe" number to fly. The hema in Jamaica said 50,000

SMS:

I was diagnosed with ITP when I was 6 years old. I am now 30, and to date I have not had any other issues (i.e. lupus). That's not to say your doctor is wrong, just that he's not a fortune teller. Take it one day at a time.

Blessings,
Hauna

Michelle wrote:

I had it through my arm. No port.

Do you have any theories about it??

Sorry Michelle, I just now saw your question. No I don't have any theories. I didn't/don't have that feeling even though I do have a port. I really was just curious!