Rituxan

Pauline:

Maybe her stomach issues are due to stress from the treatments? Maybe she is one of those people who worry themselves sick but seem fine on the outside.

Rituxan can actually take up to 12 weeks after the last infusion. Some people have seen results that late. Erica is right though, the fourth week after the first infusion is a good time for most. The week of my third infusion, I was at 3k. The week of my fourth, I was at 150k. Hang in there!

I truly hope you and Erica are right. I don't know...she look bad tonight. This is the worst I've seen her from any treatment she's ever done. She was sleeping earlier and I had to wake her up because she just didn't look right. It took me a few minutes to wake her up and then she acted like she didn't know where she was or anything. In fact, when she really woke up, she didn't even remember me waking her up to take her temp and ask her if she was ok. She's not herself at all tonight and she's in pain. Her head and stomach hurts, and more than that...her hands and knees hurt so my husband had to carry her up to bed. I hope she feels better in the morning. Maybe she is just completely worn out and needs a good nights sleep. I will be waking up every few hours to check on her tonight.

Ooohhhh watch for serum sickness. The day mine started I felt sick (malaise) but that night had a horrible headache, fever, and extreme joint pain. This is about the time that it would start.

Keep me posted.

Sorry to hear she is not well, I hope she is feeling better soon.

There is no fever and the headache is going away with Tylenol. The joint pain is still there (hands, ankles, and hip...even her legs hurt) so I had to keep her home from school today. I'm at work for a little bit then I'm going to take her to see the dr at 1:15. The dr said it would be best that she be seen to make sure she isn't having a reaction to the Rituximab. Are they able to "test" for serum sickness?

They can look for protein in the urine. It's based mostly on symptoms. Good luck!

They did bloodwork to check her stomach and her kidneys. And they had her do another CT scan of her head to rule out a head bleed because she really couldn't walk normally due to the joint pain. The dr said exactly what you said...if serum sickness were to show up, this is usually when it happens. She had a low grade fever at the hospital (99.9) and she didn't have one at home. All of her tests came back normal, which was a relief. She still hurts & doesn't feel good. They put her on steroids (120 mg), ugh! But at this point, I just want her to feel better! They will pretreat her with IV steroids, along with Benedryl and Tylenol for her last infusion next week.

BLESS HER HEART! I HOPE SHE FEELS BETTER REAL SOON. HOW OLD IS SHE?

I WAS JUST DIAGNOSED WITH ITP 2 WKS AGO, AND AT 52 YOA IT IS SCARY TO ME, SO IT HAS TO BE FOR A CHILD THAT JUST DOESNT UNDERSTAND. I HOPE SHE FEELS MUCH BETTER TOMORROW.

Pauline:

If it is serum sickness, she shouldn't have any more infusions. They need to make a proper diagnosis. Further exposures to a drug that causes serum sickness can be serious. It does sound like it if her joint pain is that bad. I could barely hold a cup or turn over in bed. Prednisone is the right treatment.

Caitlin has the same problem...she has trouble holding anything and when she got her blood draw today, she couldn't squeeze my hand like she always does when she gets them done. She also had alot of trouble getting into the car and onto the bed because she can't use her hands to "boost" herself up to get in/on the car/bed. I know they said something about not being worried if she couldn't get the final infusion and that she doesn't even "have" to get it next week. They just said that if she does get the shot, she will get steroids along with it. I thought you completed the infusion...did you not? I wasn't aware that there could be serious consequences for continuing it. I just thought it meant they wouldn't recommend this as a treatment again because the possibilities of her getting serum sickness are pretty great.

Maybe the prednisone will do the trick since she already has rituximab in her body. How quickly did the prednisone work for you? She was crying alot tonight because of the pain she is in. Thankfully, she is asleep now and I hope she sleeps through the night as I am exhausted!

ddunn-She is 11. She does understand what is going on because she has had this for 3 years. (I need to add something down below that explains her profile and will do it as soon as I figure out how to do it.)

This morning was MUCH better!! After last night (fever went up to 102), I didn't think she would be going to school. She woke up drenched in sweat; her hair was completely soaked and her shirt was pretty damp. She does have a birthday party to go to tomorrow, so she might be trying to muster up all the strength she has to look "fine" so that I don't keep her home tomorrow. Or...maybe the prednisone really did work that fast! (Hard to believe it would work after just one dose.) She took her 2nd dose before she left for school this morning and I told her if she started feeling bad, to call my dad to come get her since I think he is off work today.

I emailed the doctor to give her an update and I specifically asked if she thought she had serum sickness because I didn't get a direct answer yesterday. I don't want her going through the 4th infusion and to get a repeat of what happened the last two days. If the IV steroids will "prevent" this from happening, then I'm willing to allow her to go through with it so that she can get the full course of the treatment.

Hi Pauline,

I've been reading your posts in alarm. Poor Caitlin! I hope she feels much better soon - nothing like a potentially missed birthday party to speed the recovery process though.

I've read somewhere that there isn't much difference in outcome between a one off dose of rituxan and the full 4 doses. Can't remember where I saw it unfortunately. I hope she gets a result in counts too - will be thinking of you both next week.

Ali

Just wanted to send warm thoughts your way and hope for a rise in platelets soon. I feel so bad for Caitlin - and that reaction sounds scary for you too! Good luck - I hope Caitlin enjoys the birthday party and I hope your weekend is uneventful!

Beth - mom to Brady (age 13, diagnosed 1/18/02), last treatment was WinRho 12/08

Ali...I hope that is true too.

We just heard back from the hematologist and they said we are not going to do the last infusion next week so she is done with Rituximab. They don't want to take any chances even though they don't know for sure if it was serum sickness. (Very likely based on symptoms, but labs don't confirm it.) We will go back Thursday afternoon to get a count and to talk with her again about what to do next. (I feel like those words are coming off a broken record lately!) If the joint pain comes back in a few days, she wants us to go back to the rheumatologist because she could be experiencing "lupus-like" symptoms.

Thank you all for your support and thinking of her! It is not something I ever want her to go through again!

Pauline - that does sound like serum sickness. I'm sorry she has to go through that because it is painful. It does go away after a few days and steroids will help.

I did get the last infusion after my serum sickness, but that was only because I was misdiagnosed with a virus. If I had known, I would not have had the infusion. We don't know why I didn't get another reaction that time, but I certainly did the following year after the first infusion. It was even worse than the first time and happened quicker which is what usually happens.

If you read about serum sickness, it states that the person should stay away from the drug, period. Further exposures can bring anaphylaxic shock, and since it's a delayed reaction, that could be in the middle of the night when she is alone in bed. According to literature, there is no way to prevent serum sickness, so the steroids with the infusion won't help.

The three infusions she's already had should be enough and it will either work or not work. I don't think the fourth one would make a difference.

Poor Caitlin! I hope she feels better soon.

Pauline - I have been reading your threads. I feel so bad for Caitlin. Poor kid - that seems like so much to go through. Rituximab is next on our list if the decadron doesn't work. Now, after reading your posts, I am more reluctant NOT to try it.

I hope she is feeling better today.

weird - but Danica ALSO has a birthday party today.

Michelle

Even weirder - Dougie too! Hope that Caitlin made the party and that she is feeling somewhat better

Ali

DRAT! Serum sickness?! That is NOT the outcome you were looking for!
I am so sorry Caitlin feels dreadful, whatever they call it! Hoping that today was a better day! Ann, Caitlin's (22) Mom

Pauline,

I have been reading your posts, that must have been awful, nothing is worse than having your kid feel bad. Hope Caitlin had a good weekend and is feeling better and you got some rest as well. Good luck on this weeks counts, I'll be thinking of you both!

Karen
mom to Jordan

I hope she is feeling much better today!!!!!!! Keep us informed.

I didn't want serum sickness, but I was aware of the risks. I am still not sorry we didn't try it because I needed to know if this was something that would work for her. (And it still could!) Since she is on 120 mg of steroids a day, I would be surprised if we don't see a jump in her platelets this week. This time, the moon face is definitely showing up but I know she really needed the steroids as it is really helping her feel better.

She isn't 100% yet. Joints still hurt (just a little) and her stomach still hurts (Tums is helping some), but she's been around friends non-stop since Saturday morning and we have company coming today and tomorrow. We heated up the pool since it is Spring Break so we are enjoying that and this is something that Caitlin can do without getting bruised up or hurt. I was surprised that all of the girls got sunburned yesterday because it was only in the 60s. Made them put on tons of sunscreen this morning and they're reapplying it every few hours. Anyways, I will check back in later this week since I am planning to try to get my flowerbeds done while I have a chance and the weather is beautiful!

Wow, swimming pools and suncream! The temperature gauge on my car said it was 9 degrees today, which is way warmer than it has been, but still coats and jumpers weather. There was something on the news today because the daffodils in the Lake District are over a month late to flower this year because of the cold weather we have had. Its definitely true of my garden too. The things that weren't killed off by all the snow are much later to come into bud - I've got no daffodils either, and the magnolia which has normally come into flower by now doesn't look anywhere near. Just as well really because we are getting some overnight frosts still which would just destroy its flowers. So I'll just keep on dreaming about the sort of weather that demands sunblock!

For what it is worth, I think you did the right thing trying the rituxan, given the active lifestyle that Caitlin wants to lead and the length of time that she has had ITP for. I would want to make sure that we had tried all of the alternatives for Dougie too.

The bad reaction must have been horrible for Caitlin and the rest of you, but as you say, the treatment might still have worked. On 120mg of steroid both Caitlin and her platelets must be bouncing off the ceiling, so I won't be keeping my fingers crossed for this weeks count as I think a better result is pretty much a cert! But I will be hoping for a good result for you in a few weeks time.

Lots of luck, Ali

I'm glad she is feeling better.

I'm glad Caitlin is feeling better, sounds like a horrible thing to go through, i'm happy now my doctor decided not to treat me with rituxan, sounds a lot worse then the few side-effects i am experiencing with the Nplate. I'll cross my fingers for you that the treatment still has worked even without the last dose.

Finally some good news!!! Caitlin's count was up to 52 today!!! We will take anything after staying under 20 for almost two months! The dr was not sure if it is the Rituxan kicking in or if it is the steroids since she was on 120 mg a day and just finished yesterday morning. We don't go back now for two weeks, which will be a nice break!

Caitlin was somewhat disappointed because the hematologist came in really happy and so she thought she was going to say that her count was over 100 or the highest it had ever been. She didn't understand what the excitement was all about, lol! She does have a competition and they will be performing for a Grand Opening at the gym since we just moved locations to a larger gym. She needs her counts up for that and the competition.

Pauline - that's great! Maybe she is getting a response! Fingers crossed!

Yay! I hope its a response to the Rituxan.

I hope so too.

Caitlin reminds me so much of my other son, Josiah, with her migraines. Josiah has had them his whole life. Does she have other neuro issues? Maybe its just all tied into the whole autoimmune thing. IDK.

Caitlin got a count today and it wasn't what we expected. She does have some bruising, but she's also been active recently. Her count was down to 12. I asked her dr if there is a possibility that the Rituxan can still work, and she said probably not even though she's heard of children getting a response 3 months after they started. We talked about splenectomy again and she said we need to wait until at least the end of the summer and talk to the rheumatologist again. So, she wants to put her back on the study since I guess they never "officially" took her off the drug. She is contacting the study coordinator today to get us back on the study and she will start taking Nplate once everything gets worked out. She is not worried about the reticulin at this point because she said that Caitlin's body has had time off the drug and plus, she will not be doing this long term...just until it is ok for her to move forward and her body isn't so immunosuppressed. I asked if we will start back over again at the lowest dose and she said she doesn't know and Amgen will have to make that decision. Caitlin said that her count is at 12 because she is going to be 12 tomorrow! Due to her birthday being tomorrow, she is not sad at the moment and already has 2 friends over that will spend the night since she has no school tomorrow.