Rituxan Remission(ers) relapse....

Hi All,

Its been a while since I posted anything as for the most part things were going well for my wife. She finished her last Rituxan dose in November 2012 and saw a response almost immediately. Since December/January her counts have ranged from a high of 208 to a low of 128; the 128 coming only a week or two after the 4th infusion. It had been a nearly 8 weeks since her last draw with her Hematologist, her previous draw was 176 in mid June however her last draw was 134. To add a bit more to the anxiety, she went to the ER recently due to what she thought could have been a bad UTI (about 4 weeks ago) and her count was 196 then. I know these are good numbers but her diagnosis anniversary is coming quickly, and we've gotten a bit nervous seeing that there is a trend from 196 to 176 to 134 and that we're in for another tough winter. Her Hematologist wants her to return next week for another draw to be safe, until then we're in watch and wait mode, the daily inspections have returned, and while there is some bruising on her legs, we can't quite tell if its just normal bruising or if she's in a decline and the bruising is a result of the ITP.

For those of you who have received Rituxan as a treatment that resulted in a remission either short or long term and have have had a relapse or return of IPT symptoms, what was the onset of the relapse?

While in remission what sort of baseline did you have?
Was the drop in counts gradual over time? Quick onset?

Thanks to all in advance.

Jay

I'm in a 4+ year Rituxan remission and I've had several drops down to below 100, due to illnesses and intestinal upsets. Each time the count has gone back up to over 200. I only get counts when I'm concerned which is sometimes once or twice a year so there may be even more fluctuation than I know about but I doubt it, I'm one of those who feel awful when my counts are dropping so I can generally tell.

Erica

Seeing the doctor next week and going to talk to him about getting off the N-Plate and doing the Rituxan again. It lasted 6-8 months and I didn't have any of the side effect like I'm having with the N-Plate. I would rather do 4 weeks in a row and last for a couple of months then going in weekly for CBC and injection. I filled out some paper work online to speed up the process of getting approved for the Rituxan. My plan is to stop the N-Plate and start the Rituxan and I don't know if I can start not next week but the week after on Wednesday am. And I don't know if they will do it in house or at the hospital, either way it doesn't matter with me. I'm sure I'll have to do another round of Dex to get me to that Wednesday.

I had a 2 1/2 year remission with Rituxan, over the course of 2 1/2 years my counts slowly crept down to 70K and stayed there for about a year - then I got a very serious skin infection from a pedicure and within 2 weeks my counts dropped to 28K and started steroid treatments again.

Since Feb of 2013 I have been on the watch and see mode of treatment and my counts have stayed between 30K and 40K with no treatments.

Cindy Ann

Hi Jay,
I had my first round of Rituxan treatments about 4 1/2 years ago after my initial diagnosis. My counts ranged anywhere from 170-290 for 4 1/5 years. It was wonderful! Also with the Rituxan, I had zero side effects, so I was very pleased and thankful that the treatment worked so well! Like your wife, I had the occasional "scare" where my counts would seem to bounce around. I remember them going from the 250 range down to 173 and I was so paranoid that they were dropping...but my next count was 232, so I stopped reading into it so much. Unfortunately, this past summer I got a nasty bacterial bout of food poisoning and my counts dropped down to 103. Since June, I have been on the rollercoaster of trying to "rebuild" by counts back to the "normal" range. I have been on prednisone for some time now and just started the taper. Unfortunately due to stress, sickness, and other factors my counts dropped all the way down to 60, but have been steadily climbing up---they were at 140 yesterday, which was great news. However, if the taper doesn't hold them (which it usually doesn't for me), I am prepared to start my second round of Rituxan and pray for another lengthy remission! As for side effects, I don't really present symptoms until my counts drop below 20,000. I never really bruise or show petechiae either, I have nosebleeds....EEK! I'd rather have the bruising! The bruising your wife is showing with a count of 134 is probably just normal bruising seeing as how that is a very safe platelet count. However, I am not a doctor and haven't seen the bruises. To answer your other question, when I got sick and my counts plummeted, they did show a downward trend, but it was hard to really see it because my hema put me on steroids immediately--which caused them to climb. I know it is easier said than done, but stressing about it incessantly will only compound the problem. I fully believe the ITP can be a stress induced and mediated disease. She is in a very safe range and like Erica said, if you don't get a CBC everday, you really don't know how extreme the "bouncing around" can be. Also, since the Rituxan has lasted a year, why would you think it would just stop immediately just because a year has passed? There is no timeline for Rituxan--sometimes it works a long time, sometimes it doesn't. It is frustrating to say the least, but the constant worrying and questioning will only perpetuate things. One piece of advice I can give to you and your wife is to be very careful about two things: stress and germs--these two things can bring on a relapse. Have you talked to her doctor about possible safe vaccinations to keep her safe from germs? Like Cindy Ann referenced, I stay away from anything that could possibly make me sick! This is easier said than done since I am a kindergarten teacher, but I am an advocate of constant hand washing, not touching my face, and making sure I eat in a healthy way (for the most part...haha!). Being proactive is good and it is awesome that you care so much about your wife to post on here! Keep up the good work!

Natalie,

Thanks for the response, not good to hear about the food issue you experienced but good to hear you've had a good experience with Rituxan. As for the timing, when my wife was diagnosed, we kept trying to look back to see if we saw symptoms leading up to her crash (she went down to 0) when she was originally diagnosed on 22 Oct 2012. She too did prednisone, which she didn't respond to very well, and her Hematologist wanted to waste no time by starting the Rituxan. She responded almost immediately to the first dose, and was well into the low 200's after the 4th infusion. Since then, she's dipped below 150 a couple times and have bounced back, I guess since we saw the brusing, and a few numbers trending downward we were concerned that the trend could potentially lead to another harsh winter. She has another appointment next week, if her numbers are good, she'll ask about vaccinations (i.e. flu, etc.) Last year she couldn't get any vaccines and between the Rituxan and Prednisone, she got sick quite often including having the flu.

We do have a little one too (3 yrs) so he's adding to the stresses of life. As a bystander and caregiver I find this way more stressful I think than my wife does. There's just too much to worry about to have it not affect us.

I appreciate your perspective and it makes me feel better at least, I'm sure my wife will be happy to hear (parts of your story anyway). I wish you the best with your re-remission...

Erica,

Thanks for sharing your experiences. Its encouraging to hear that you've experienced what my wife is experiencing most recently. I hope all will be well next Tuesday when she gets her next draw.

Thanks again.

Jay

Jay:

I think it's interesting that a drop in counts would mean a harsh winter for you. This is something that you've managed before and you know what to expect now. If counts do drop to treatment level, all will be fine. It's normal to have dips here and there and it's frustrating to see a downward trend. As of now though, there is no way to know how this will turn out. Even with the worst case scenario, you will deal with it.

I must be weird because I considered Rituxan days to be a vacation day from work. Sit and relax vs run around like a nut all day? Hmmmm, tough choice.

ITP can be a series of ups and downs, but it doesn't have to ruin a whole season. It's manageable and while not pleasant, you take a breath, dive in, and try to keep life as normal as possible. That is how you will get through it intact.

Hi Sandi,

The harsh winter comment was due to the wife having a suppressed immune system....She got literally every cold and had the Flu twice (confirmed two different strains) at different times while on Prednisone and Rituxan until the Dr. tapered her Pred dose...

And you're right, this should be hold hat for us by now. As my wife said, perhaps it isn't all that bad if we have to do this 4 times a year.

Maybe she won't get sick this time. I didn't get sick any more often; maybe it was just a flukey thing.