Repeating Rituxan after remission

I was diagnosed in Feb of 2006. I was given Rituxan that October and just now am out of a 4.5 year remission. Let's see what happens this time.

Right now, I am on 40 mg prednisone, platelets are 35k. My hema said that I can lower the prednisone of Friday when I have my first Rituxan. What do you guys think, should I reduce on that Friday and let the benedryl and Tylenol handle it, or wait til Saturday, and take the withdrawl all by itself? I'm going from 40 to 20, I know, I know, it's quite a drop! From 60 to 40 I was just really jittery and shakey for about 4 hours on 2 days. But no joint pains or anything else.

I also can't remember how long the first infusion lasts. Anyone want to remind me? I asked if the infusion room had WiFi. Guess not. Rats! That would make the whole experience a breeze. I would just take my netbook with me and surf the whole time

If I react the same way I did last time to the Rituxan, I will be in the 40's next week, and won't go below the 80's for 4.5 years.

Dru, you sure do well on a small amount of prednisone. My platelets hardly react at all. From a count of 7, prednisone of 60 only brought me up to 57. How is your withdrawal going? I hope you can stabilize by the time school starts. I know how important those first meetings and days of school are. You really can't afford to be out or have anything else on your mind! That's why I pushed for Rituxan this week. I want any health issues out of the way. I hope it works out for you!

I'd maintain the pred through the Rituxan transfusions and then taper. Prednisone is sometimes used to pre-medicate for Rituxan, and can help head off or alleviate any reactions - it seems like bad timing to drop the pred right when you are doing the Rituxan. It also might make it hard to distinguish if you are having a reaction to the Rituxan or to the pred taper.
Erica

I don't get why the 20 mg drop each time. Dropping 5 or 10 would be so much easier on you. When you do it is up to you, but I sure wouldn't want to drop 20 mg's the day after Rituxan (because of what Erica said).

The infusions can take between 4 to 6 hours. I'm not sure if they will speed it up since you've had it before or not.

My counts the second round did not follow the same pattern as the first time at all.

I was diagnosed in 2004, with two rounds of Rituxin the last on in Oct 09. I had higher counts with the last round with a high of 350k. Now I seem to have evened out at 180k. For me Prednisone only worked as long as I was on a higher dose. Once we realized that Pred was not sustaining counts, Rituxin was started. On my first dose I came in at 8a and left around 10p. That was one Long day. I tolerated the other 3 just fine. Benadryl and Tylonel were given prior to infussion. I did have a reaction during the first dose of the second round. After that the other treatments went quick, 4-5hrs. I was tapered off Pred by 20's until 10mg, 5mg, 2.5mg.0mg. Next route for me is Promacta. Hope it will not be needed!!
Bummer on the WiFi. It definatly makes the time go faster. Benadryl made me quite sleepy. Barely remember Nurses doing vitals every 1/2hr.

That seems like a fast taper, you might feel better going more slowly. My doc drops me by 2.5 mg each week and I'm feeling fine as far as any side affects from the prednisone. But, today was my first day on 2.5 instead of 5 and I have been having parathesias all day, really bad. for me that means my counts are dropping. I wouldnt be surprised if my counts are way down next week. My Rituxan treatments lasted between 6 and 7 hours. Are you going to do the full dose and full course of rituxan?
Too bad about no WiFi. I took books on CD and listened during my treatments. I reacted to rituxan and they had to give me lots of benedryl and I dont think I could have read or used a computer, I was pretty out of it.

and I am live! There is WiFi

Here I am in the chemo room! Glad I brought my netbook. I am doing the 4 weekly infusions at the full dose. Well, that will take care of my deductible for this year. My DR. said that not everyone agrees that doing the lower amount of Rituxan, or shorter course has the same result as the full course.

No let's see if I can stay conscious.
Wish me luck!

That is great they have wifi, will make the time go by, if you are awake. How do you with getting the IV needle in? You mentioned before that blood draws were hard. The IV nurses have a terrible time with me trying to get that needle in.

Hope you are doing ok so far!

The nurse seemed to have a hard time "finding" a vein. She had me flex my hands. I guess it helped. She had no trouble inserting the iv and said it was a "good" one. My veins though small usually don't cause trouble.
It just hurts a lot!
I did start having a reaction to the Rituxan. They stopped it for a while. Now I am going again and everything seems well. My nurse is threating to send me home if I react again. They have all my records from last time I did this and know I am very sensetive. Sorry for the spelling I am too lazy to fix it.

They have also given me a prescription to take next time an hour before my appointment. But I will have to get my husband to drive me in then. the drug is iorazepam What is it?

Lorazapan is generic for Ativan, it is typically for anxiety and is also used (I see this on tv medical dramas) as an infusion for I think drug reactions. I'm not sure how or why it works for drug reactions but they are always infusing people with it on for example House, often unconscious people, so I can tell it isn't always for anxiety!
Erica

I reacted too and had to have it stopped. I did take ativan one of the times, it is for anxiety and it makes me really sleepy. I am very sensitive to everything. Hope everything is going well now.

I'm home. WOW Did I have the strangest experience!

I was exhausted and took a nap when I got home. When I woke up I saw it was 5 o'clock. It was a strange color out the window and I thought it was morning and I had slept 13 hours straight. First I wondered why I didnt have any pj's on. Then I wondered what my husband had done for dinner and where he was at 5AM. Finally I started sorting out that maybe it wasn't 5 in the morning. I felt really rested having slept 13 hours. Now I am feeling exhausted having only slept 2! sigh and now I have to cook dinner sigh. maybe I'll go back to bed...

AND I feel like a big huge hypochondriac! Some how after the nurse stopped the Rituxan and threatened to send me home with no further treating, she, unknowing to me, must have really pushed the dose in fast.

I started the pre meds some where around 9:30, started the Rituxan somewhere in the 10 o'clock range, stopped for a bit and finished by 2:30!!

And when she started again I had absolutely no reaction! All done in 5 hours! :blush: :blush: :blush:
And she sent me home with an anti-anxiety med to take before coming next time..:blush: :blush:

How will I face my friends at PDSA and tell them that I went throught that fast??? I really did have a scratchy throat! I really did feel like my throat was closing up.... :blush: :blush:

I must be a complete nut case. sigh :blush:

You're not a nut case! I had the same problem during my first infusion - my throat got scratchy and I was coughing a lot, but didn't recognize it as a reaction and never mentioned it to any one. It eventually stopped on its own. Five hours is an average infusion time. I'm glad things went well.

Waking up disoriented is scary, but you found your wits!

Sandi,
Also remember this is not Ananta's first infusion, it is the first in a second series. Ananta, that makes me think you should be extra alert for reactions and speak up if you sense something next time - do not be embarassed! If it is an allergic reaction, it can get worse each time. Seriously - people die of heart attacks because they are embarassed to speak up about having chest pain. Don't be shamed into ignoring a reaction!

Glad you are doing ok - I bet your count will go up really fast. Funny story!
Erica

The embarrassing part for me is how I told my Dr, and nurse that I couldn't go fast or I would get a reaction. And then when I don't know we are going quicker, I have no reaction. The nurse made a point of telling me she read the notes that were left when I did Rituxan 4 years ago, and understood that I had problems at a faster pace.

Yes, I know. She did mention it and they reacted, so it was all good.

Ok, sorry - waaay too much caffeine today. What I was trying to say is that I believed she had the reaction and still got out of there in 5 hours because the same thing happened to me. I wasn't saying that she shouldn't have told anyone.

Glad you got through it with your sense of humor intact! I had that scratchy throat and felt like my throat was closing up too. I think they just gave me more benedryl but didn't slow it down. And no, you aren't a nut case! Hope you have a good night and feel good tomorrow.

My count went down today to 50K from over 100k last week. I've been on alternate days 5mg and 2.5 prednisone. My hema increased me back to 5mg a day because I want to go visit my daughter in DC for a few days. I will taper more slowly when I get back next week and go back to Dr. on July 26. Then she said if my counts keep decreasing with the taper we will go to Rituxan soon. I'm not looking forward to that but glad at least I can get away for a few days now.

wonderful news that you get to visit your daughter. Sorry about the counts though. Try to take this time to enjoy yourself a little bit. Try real hard not to obsess about ITP when your there. Take some time and relax and enjoy yourself!

Dru - I'll go with you! My daughter lives in DC too.

Have a good trip, Dru. I am visiting my daughter in CA at the end of the month.

What da ya think? Do I fill the prescription of iorazepam? Do I take it on Friday, my next Rituxan treatment? I emailed my Dr. and he said I didn't have to take it if I didn't want to. But I'm afraid the nurse will be mad at me if I don't take it. If I do take it, I will have to have someone else drive me there and back, which is pretty inconvenient. And I hate taking more drugs. Especially something that has a 9 hour half life. And makes me compliant. Sheez, my husband might make me start cleaning windows if he finds that out!

Note to self, dress warmly and bring water. I didn't know I would be freezing cold and dieing of thirst while I was there. I ran the nurses ragged filling up their tiny cup of water.

Not sure what to tell you about the meds. I have to have someone drive me anyway because they load me up on benedryl and it makes me really drowsy. I'm thinking I might take some xanax before, but not sure. I dont like being compliant either. But if you want to maybe you could find a friend to drive you, people like to help out and it give something concrete to do. Good luck Friday, let us know how it goes.

Today was my 2nd Rituxan in my second round. The nurse immediately asked me if I had taken the lorazepam.
I gave her a big smile and said, No! She was not happy and said it was Dr.'s orders. And, I still smiling told her that I had emailed my Dr and he said it was up to me. I told her I wouldn't cause her any trouble today. She said she would stop if there was any problem and then I would have to have a long talk with my hema.

My nurse did a great job putting in the IV needle and took samples for a CBC. Results: 78k YES! Up from 36 last week and higher than my first time with Rituxan!

And as for the infusion, smooth as glass. My nurse started out slowly, 50 mg an hour. And increased every 1/2 hour. I got no reaction at all; it was a total non-event. She started the premeds at 9:00 and I was done by (I was shocked and she was surprised too) 12:30 :laugh: Didn't even get to finish the movie I was watching! I was pretty worn out when I got home though.

Last week I dropped my prednisone from 40 to 20 the day after Rituxan. It was also a non-event. Tomorrow I will go from 20 to 10. I don't see any point in being on it any longer than necessary, it's not doing anything positive for me.

All and all a great day. I hope everyone else will have such great numbers and great days.

Sounds like you need a nicer nurse! Glad everything went fine. I'm wishing I can start Rituxan as soon as my doctor gets back from vacation. I'm in DC visiting my daughter, but have alot more bruising and it is getting me stressed out. If I get any petechia I'm going to take an increased dose of prednisone.

My nurse is generally nice, concerned about making you comfortable etc. Always calling everyone "sweetie". But she does have an "edge" to her.

I hope things have improved for you Dru. Have you gotten any petechia?

Today I had my third Rituxan. One day early, I think they don't have room tomorrow. Everything went well.
My platelets had dropped a bit, unfortunately. Last week I was 78k today I was 57k. My nurse said "don't be discouraged". Still a safe number. I know they bounce around a bit. Last time I had Rituxan on the third infusion, my platelets were 92k. BUT if you average the two weeks from last time with the two weeks from this time they come out to the same average of 68k. (A bit of a number cruncher aren't I?)

I am going away next week, so I won't get my 4th Rituxan until Aug 4th. And I have an appointment to see my hema then. The highlight of my day! He is always so kind and concerned, and gives you all the time you need. I always want good numbers then to make him proud!

If your counts are great by Aug 4, don't get the fourth infusion - you don't need it! I'm sure they will be great by then - Erica

Glad your third infusion went well. Nice to be almost done! I was in DC with my daughter and having some petechia and alot of bruising. So, I did not decrease my prednisone dose like I was supposed to. I drove back to Boston, 11 hours with my daughters cat who is going to stay with us for a while.

I will go to the doc on Tuesday. I have the tired feeling I get when my counts are low. I like my doc too, she is a good listener and lets me be part of the treatment decision making. She sees me every week when I go in for counts.

Hello Ladies, Im pretty new to the site, but I must say all of you are very helpful. Ananta, I loved the way you smiled big , then said "No" about taking Lorazepam. Here I sit reading all this emotional and serious (real life) stuff, and I just start laughing. Thank you Ananta. Dru and Ananta is this your second time doing Rituxan? I'm getting ready to do my first ever Rituxan next Wed. (10th) I truly hope to have great results, but from what I've been reading it could take up to 4 weeks for results. Patience is a virtue they say. My plt ct was 11 last wk. This wk it is 39. Thanks for the advice about water. Dru I hope you Ananta had a wonderful time visting your daughters. To everyone at this PDSA site, thanks so much for all your wealth of information. I do labs the day before my treatment. Ladies one more question? Do they normally do the labs on the same day in the infustion center or do you do your labs the day before at the lab? Thanks Christina

I did my bloods the day before my treatments.

Good luck with the Rituxan!

Christina:
Thanks for your comments. I think humor helps us get through the tough times in life. And this is my second time taking Rituxan. In fact, Dru and I seem to be following each other. We both got a 4.5 year remission from Rituxan the first time we took it. We also both ended our first Rituxan treatment in October of 2006. So we are interested to see what happens next.

I am a lot more relaxed this time around with Rituxan and ITP in general. Although I do get obsessive about my numbers and researching ITP in general. And hey guess what? When you are having your first Rituxan, I will be having my first cataract operation! I will be as nervous as you! I'll be sending you good wishes!

Yesterday was my last Rituxan treatment. Yes, at my clinic they take the CBC just before the Rituxan infusion. That way they only have to stick you once. My platelets were 97k Erica, since I was already prepped for the IV, it would be hard to say no to the Rituxan. And there is a reason for the 4th infusion. I was reading how the B cells can actually hide out from the Rituxan for a while (I can't remember where) so weekly infusions help to get them all.

And Christina be patient. Not everyone gets good numbers as quickly as I do. It can take 12 weeks to see improvement. Heck, I even read a research paper that said some patients got a rise after 6 months! That seems a little hard to believe!

So the infusion went fine. My pre-treatment cocktail had the usual of Tylenol, and Benedryl. It also included dexamethasone, and some other drug that started with a p and had a short name. These were all used in each of my infusions. I felt pretty light headed, and dizzy in the evening. I took it as a sign of low blood pressure. Did you know that if you drink a glass of water, your blood pressure will immediately rise? So I took some water and felt a little better. Today I am fine.

So Wednesday I am facing cataract surgery and another CBC in two weeks. Dru how did it go for you?