SECOND RITUXAN TREATMENT

I've been in doctor's office past 8 working days in a row. AHHHH!! After first Rituxan treatment within a couple of days platelets 14, then 9. Had transfusion and they went to 20 (today). I have only 3 more doses of Pred at 2 mg. so makes me off completely Sunday. I am not scheduled for labs until my third Rituxan treatment in 7 days. This worries me a bit? My white count in a little high. Bruising is ridiculous. Bummer first nurse today stuck me 3 times unsuccessfully for IV. I guess I will just wait and see how I feel on Friday and call doc if I want a blood test?

No reaction to this Rituxan treatment - but this time it made me really sleepy. I don't take the benydryl rather a steroid that starts with a D. Decadron?

I don't want to pester the doctor but not being over 20 since start of Rituxan isn't making me feel all that great about going a whole week without labs. Am I being paranoid? Thank you.

You are not paranoid. It is reasonable to worry over ITP since it is a hell of a roller coaster ride. Rituxan is infused once a week for four weeks. Responses vary among those who are treated. You can have a response to treatment weeks after the last infusion and some get a response right away. I would not hesitate to talk to your doctor and ask questions. This board is a good place to be as there is a wealth of information about ITP. How long have you had ITP?

I was diagnosed in early March while in the hospital - BUT I left the hospital thinking I was on steroids for the pancreatitis I had. Honestly, I didn't give a whole lot of thought to the ITP diagnosis. The hospitalist did not explain very much about it and he indicated a Hematologist would contact me post-release. I also had to get a gall bladder operation scheduled so that was forefront on my mind at the time. Basically, it took weeks for me to "connect" with a doctor so I've only understood the ramifications of the ITP for about a month.

After some discussion with family I've decided to call the doctor's office and ask for a blood draw on Friday. I think I'll have a clearer head going into the weekend with the knowledge of my counts. I only have 2 more 2 mg of Pred to take. This is down from 80 a day just a month ago so Sunday and Monday will be my first two days steroid free. I hope my count is better than the measly 20 yesterday! Thanks for your support. Lin

Hello Lin,
Good move to call the doctor and go for a blood draw. I hope you get good news. Keep us posted as there are knowledgeable ITP's on this board who can help.

I don't think your paranoid either. This can be a scary thing, listen to me!! LOL I am trying to sound like a "old pro" at it! LOL I've only been diagnosed since early February. Maybe it's because the NPlate is keeping my counts up and I'm feeling kinda good lately too, most of the time anyway. I'm going for my 3rd Rituxan treatment tomorrow. I'm not sure if the Rituxan is working or not because I'm on the NPlate too. I gotta ask about that tomorrow. Let us know what your counts are!

I think that one count a week is enough. Any more and you risk living ITP instead of living your life with ITP. If you're not bleeding, which means nose bleeds that don't stop or blood blisters in the mouth or blood in the urnine, then relax and know that you're fine. Treat the symptoms and not the number is the order of the day.

I was going to say the same thing Ann did. When I had Rituxan treatments, I only had counts done on treatment days, once a week. My counts were 11, 3, 8, etc. I looked at symptoms.

However, if you really have the need to know, get it done. It's better than living with anxiety all weekend.

Thanks to all the responses. My platelets were 27 on Friday. White count pretty high due I guess due to an infection - ulcers in my mouth. Can I say they friggin HURT!!!!!!!!!! But hey let's be positive and think of all the lost weight because it hurts to eat I was given Clindamycin, a tube of Lidocaine and something called "magic mouthwash". This is miserable so I took a little extra Prednisone yesterday and it felt 500 times better. Today it's back to miserable and I'm supposed to be off Prednisone altogether so I'm going to try and suck it up.

To Ann and Sandi: I agree wholeheartedly with not letting this thing take over my life and I have no intention of doing so. Turns out, it was the right choice so I can benefit from antibiotics this weekend. I probably wasn't clear... I don't have a need to know the "number" every day at all - but with this wretched mouth and really quite significant raised bruises - I based my decision on the whole body.

Lin:

You have to do what you are comfortable with. I'm glad your count is decent.

Just a thought. Pred gives me a sore mouth. Forgot that until just now. I thought it was thrush the first time but the dentist said it wasn't, was just a lot of sores. It was miserable.

Ann, I can tell you are quite brave!! I'm getting there. As someone whose never really been sick before all this mess has kinda thrown me. However, I'm sucking it up and am determined not to let "numbers" rule my life. For me, if I stay above 10 I think I shall be happy Thanks.