Repeating Rituxan after remission

Hi Christina,
Yes this is my second round of Rituxan. I had it first in October 2006 and got a 4 1/2 year remission from it.

I had my second round today and it went great, no chest pains, no kindle dysfunction. Last week I had chest pains during the infusion, but Monday I saw a cardiologist and had a stress test that was negative for any issues. So, the hematologist felt that the Rituxan was just bothering my stomach. So, I took extra ranitadine, mylanta, and just took some lite snacks, gingerale, crackers, and a smoothie for duing the infusion and I had no problems. I have the CBC on the day of the infusion too. First they do the CBC, then I see my doctor, then I go to the infusion room, they give me hydrocortisone, zantac, and benedryl first, then the Rituxan, starting slowly because I have reacted to it sometimes.

Try not to worry about it too much, it is likely to go just fine. But, if you need extra benedryl, a slower drip, or whatever during the infusions the nurses monitor you carefully. Take something to read or do during the time, it really helps distract you.

Ananta, you and I are really sisters in the ITP journey, my platelets were 97 too Good luck with the cataract surgery. I may be after you with this one, but I do have a cataract, not yet needing surgery tho.

And Christina, like Ananta said, dont worry if your counts dont immediately rise with the Rituxan, mine really bounced around last time even falling after the third infusion. They stabilized out over 300K 3 months after the last Rituxan.

Cataract surgery was a breeze last week. Now I can see better without my glasses! But the meds caused a problem. The antibiotic they wanted me to use was from the Cipro family. I said I had bad reactions to Cipro type drugs. They said it wouldn't cause any problem since it was just an eye drop. So 4 days on the antibiotic and I had diarrhea. "Highly unusual" said the pharmacist. "Very sensitive" said the Dr. "Figures" I said. They changed my med.

Today I had my CBC, 179,000. That's 2 weeks since my last Rituxan.

How are you doing Dru?? What are your numbers? Are you finishing your Rituxan before school starts?

My school starts on Monday, so I am in great shape, got everything done in time!!

Hi Ananta,
Thats great news about your counts and getting through the surgery okay. My last Rituxan is tomorrow. I'm not sure about my counts, I do have some bruising. The last 2 Rituxan sessions were easy, no problems so I am anticipating an easy day tomorrow. I go back to school August 30. If my counts are okay tomorrow then I will be able to taper off the prednisone and hopefully the worst of those taper side effects will be over after the first week.

My counts Friday were 164k so that is a good thing. The Rituxan went fine, 3 hours total and no problems. I sure felt horrible yesterday, ? from hydrocortisone I was given Friday, I dont know but feel better today.

I just saw a new doctor and he is advising tryining Rituxin, is it an infusion???

Yes, it is an infusion. You can read more about it in the treatment section under "B-Cell Depletion"

Hello, Its been a few weeks since I last wrote in. Between my treatments and my sons appt 2-3 times a week. He got in motorcycle accident 7-7-11, basically the week I was to start treatment. Postponed for a few wks. Fast forward to 8/23 day before third dose. Ct was 120, only down by 6 but going the wrong way. Chin up and next wk will be better. 8/30 day before fourth and final treatment, time for lab work again. Went out this evening to celebrate my other sons birthday (24). Found out lab results before I was to do Rituxan 8/31 (almost didnt, nurse wanted to check with Dr.) Yes youre right the count dropped 56. I pretty much knew it was in the 50's because of how I felt and looked. Re-check labs on 9/6. Ananta I am glad Cataract surgery was a breeze. Nice ct by the way 179. Dru Im impressed Rituxan in 3 hours. I go slow so as no reactions 4-5 hours. Nice ct by the way 164. Thanks on the heads up on Rituxn on your third dose. When I got my # just before by fourth treatment, I thought I was going to lose it. I just told myselft buck up and get over it. With Rituxan it says flu like symptons, well I flu feeling Wed-Tues. Just in time for another treatment.As this coming Wed. will be my first without treatment, I sure hope I feel good on Wed. My medically challenged family will be going to the lake. Two of us will watching and taking care of the site. But not to be in a Dr. office of any kind sounds marvelous. This site is heaven sent, everyone here knows about all the ups and downs ot ITP. Three little letters, very powerful. Thanks Christina

Christina,
I have a doc appt 9/6 also. When I look back at my counts from almost 5 years ago I see they did go up and down quite a bit. It took over 8 weeks to be stable. So, stay optomistic. That is terrible about your son. Hope he is doing better.

Hello, well my Tuesday lab result came back and my count went up to 106. I'm happy about the count going up. Thanks to everyone for listening, and all the helpful advice. Christina P.S. Dru how did your Dr. appt go?

Yeah, Dru what's the report?
Good number Christina. I hope that you continue to respond well. How is your son? My daughter has a motorcycle (she's 23) and I always worry. How long has it been since your last Rituxan?

My counts were 197k, one month after my last Rituxan. I don't have a CBC again until December! Yeah! No more needles! But Dru, we will definitely have to arrange something to keep track of how long our remissions will be this time. I really want to know how closely we follow each other. My Dr. wished me a "4 and a half year plus" remission. Sounds good!

Hmm doesn't seem like the smiley faces are working!

My doc appt very good, counts at 174 and it was not quite 3 weeks since my last Rituxan. I have been off prednisone for 2 weeks and am very glad about that. I have to go for another count and nurse pract. visit in 2 weeks and doc visit in one month.

Ananta and Christina, hoping for long remissions for us all! Ananta, I plan to be better about posting on the disscussion groups even if I do have a long remission. So maybe we can keep track of each other that way.

It has been nice to be out of the doc office and back to work!

"It has been nice to be out of the doc office and back to work!"
Amen Sister! (That is supposed to be a smiley face, I'm not sure if it will work!)

As far as staying in touch, I just don't think I will pay attention to this website for 4.5 years (or more). But I will try! I can definitely come around yearly anniversaries (this time of year). Just before school starting again will be easy to remember.

Well my last visit to the lab and Dr. office my numbers went down to 100. Rituxan and Prednison I was expecting to go up not down. I Told the Dr. I was taking a week off on having lab draws. I go tomorrow morning for labs. Then Thursday find out my numbers at the Dr. office. I hope the numbers are up or at least the same. I will be unhappy to say the least if my numbers went down. Im not having the tingly thing in my hands, so the numbers should be up. Bloody nose for almost a week, I know that isnt a good sign, but it could also be from my headaches every day. I will run all this by my Dr. on Thursday. Good luck ladies. Thanks Christina

Hi Christina,
Sorry your counts are down, but they are still good. Do you usually get a tingling sensation when your counts are low? I do but not just in my hands, it is all over and drives me crazy.

Good luck with your doc appt.


Dru

Hello, well I got my results on the 29th, my count is now at 75, they are so going the wrong way. Trust me I know about the rollercoaster, but that means up and down, not just down.I get retested on the 12th. That will be 9 wks after first Rituxan, and 6 wks after last Rituxan. Yes I usually get a tingly feeling in my hands,sometimes below my knee. My Doc dropped my prednisone to 10, I seriously cant remember when I was last at 10. He says Rituxan has to do the job, and it was high time I was off Prednisone. I started working out again Sunday.With my Thyroid and ITP and all the meds , boy have I put on the weight.
Thanks everyone for the use of your ear and heart.
Christina

Sorry to hear your counts are down. I know how depressing that can be. But, remember that there are several people around here who have been able to get off pred following Rituxan and the counts, while not over 100k are still over 30K and in the safe range. Good for you with the work outs!

Hello, well it has been a few weeks since I gave numbers. I worked a nine day stretch, then had one day off back for four, etc. At any rate you know my count was 75 on 9/29, then on 10/12 they dropped to 40. Which of course means no every two weeks, back to weekly lab visits. Well on 10/18 my count was 36. So it has been 10 wks after first treatment and 7 wks after last treatment. Am I wrong to think this isnt working or can it just turn around on wk 10, like I think I've heard Sandi say. I sure hope so. Next question , if it doesn't work has anyone done a second round of Rituxan ( 4 treatments) ? Is their somenthing else like Nyplate that has good results. Could I have messed the treatments up by not taking a month off while doing the Rituxan treatments? My legs and arms ache.Enough of complaning and whining, and all about me. Hey Ananta, congrats and talk to around holiday's and just before school starts. Enjoy your remission and I'll be their soon. Dru, 174 how awesome is that, way to go lady. Im assuming your numbers are the same or higher. I will be catch up to you before you know it. Sorry everyone for the very long msg.

Well, the chances of it working now are slim, but there is still a shot. Having four more infusions probably wouldn't help. Studies have shown that four is more than enough.

No, you didn't screw anything up by working during the infusions. Most of us did too.

I'd give it another week or two (or three) and if counts continue to drop, talk to your doctor about N-Plate or Promacta. Those can work when Rituxan does not.

Christina,
Sorry your counts are down. Dont feel like it would have helped to take the time off work, it wouldn't make any difference. I think my counts are okay, but probably down a bit as I have had some bruising over the past week. I am still having the tingling and numbness still. My doc did an ANA test, some other autoantibody tests, and nothing came out of it except that my blood sugar is higher than normal. So, I have to go see my PCP about that and also might talk to her about Lyrica, as it might help with the muscle aches I have as well as the tingling.


Dru

Dru - if you take Lyrica, let me know how it goes. I gave it a shot and it didn't go well.

Thanks Sandi,
the muscle pain plus parathesias are still bad. I'm not sure about the Lyrica, I don't usually do well with meds. What side effects did you get with it?

Dru

Well, let me tell you. It started out great. Day one, I woke up with no muscle pain which was a first for me. I sprinted out of bed for work and practically sang my way through the day. I thought it was great!

I can't even remember how long I took it - two or three weeks? Anyway, I was sleeping in every day and late for work, groggy and fuzzy-headed all the time, disoriented, forgot where I was when I was driving home from work, didn't recognize my surroundings, had panic attacks, etc. The list went on. I wasn't able to function. The day I stopped taking it, I thought I was going to die. I was stuck in bed unable to move; I'd never had so much muscle and joint pain. It was an awful experience.

You can read about it here. It's pretty detailed.

www.pdsa.org/forum/10-social-chat/2201-lyrica-done-with-it.html

Thanks, Sandi. I read through all that link. I think I will stay away from Lyrica unless my symptoms get so bad I can't work. I'm tired of going to doctors anyway. I really don't like the brain mush side effects you got, my brain is way too fogged up to start with!

Don't let my experience scare you. Some people do okay. I read about it on askapatient.com and saw quite a lot of scary things though. My Rheumatologist says some of her patients do quite well on it. The thing is, I was on a really low dose.

If I do try it, it'll be a low dose. I'm going to have to go to the primary care doc sometime soon to talk about my blood sugar problem, so I will bring it up with her.

Hello Ladies, Its been awhile , but just didn't want to post to soon and get my hopes up. Well my ct on 10/18 was 36 and then the next week it was the same, I found that odd because I have never had two back to back exact number. Anyway, the next lab on 11/02 was 64, then today's number is(drumroll please) 124. Just maybe I am a late bloomer. Today would be 11 weeks after last treatment. I actually am not dreading my next lab draw, becuase I fully expect the numbers to go up. (Knock on wood) Yes I'am superstitious. Well at least for right now their isn't anymore talk about more Rituxan. Thank goodness, because I wasn't looking forward to being sick the entire Holiday Season. Speaking of that, from my family to all of your's have a wonderful Thanksgiving. God Bless Thanks again for everything to all of you ladies and gentlemen. Love Christina

That's great news, Christina! Always good to have platelets for the holidays! My wife goes in Friday for a blood draw. She has had counts above 200k in the 4 1/2 months since her last Rituxan infusion. She takes 5 mg prednisone twice a week. If her platelets are still up, she'll likely go off prednisone. Let's keep those positive platelet thoughts going for everyone!

That is such good news! Enjoy your Thanksgiving

Hello, hope everyone had a nice Thanksgiving. My husband and I celebrated 32nd Anniversary on Thanksgiving. Well I did my lab work I was looking forward to and my numbers came back as 26 thousand. Usually I have a one day pity party ,but this one was a two day pity party. I really thought my numbers were going to go up. Didn't have any of the usual signs. I got a bad toothache over the holiday, by the time they looked at it on Tues. am they said I would need a root canal. So on Thursday I kinda said to the Doc, one more lab draw and maybe the numbers were off because of the infection. I do labs again on the 12th. I really don't want to be doing this during the holiday season. How is everyone doing on the holiday shopping? My household has already went and picked our tree out and put it up. We actually did it the day after Thanksgiving, when we usually do it on my b-day , which was a few days ago. Thanks Christina

Chistina, I am so sorry to hear of your platelet drop. I pray you get a better result on the 12th. Hang in there, I know things will get better. Focusing on Christmas should help. We go in on the 27th for my wife's next CBC. Sometime about 4 days before we go in, I'll start getting a knot in my stomach - I'm a world-class "worrier". Congratulations on your anniversary. We also celebrated our 32nd anniversary on Sept. 8.
Jim