Started Rituxin and Now Waiting

I started Rituxin this past Friday and thought I would throw my experience out there for anyone who might be about to start or new to this like me as well.
I have tried Dexamethasone and IVIG and Prednisone and all have had pretty bad side effects for me. The IVIG even had me in the ER for 12 hours.
So naturally my doctors and I were cautious about starting Rituxin. The Benadryl made me feel very tired and then the Rituxin made me nauseous, I got the chills, and then threw up. Then my throat started to close up and act strange, so we had to pause the treatment after a couple of hours. I really didn't want to give up on it, so we slowed down the process and the side effects didn't come back. It took 9 hours and it really was not a fun day. The next 3 treatments will all take about 9 hours since they won't be upping the process at all.
I have become a bit of a pessimist these days so I am not holding out too high of hopes, but I want it to be worth it.
The nurses were all wonderful and I am happy that they are all so attentive and awesome. I hope this time I am not so tired or sick because I would like to be able to watch some shows instead of be sick and sleep the whole time.

Welcome back!
Most people don't have the troubles you have had with Rituxan, but it is not unusual. I hear that often it gets better after the first treatment, so fingers crossed!
Were you tested for antiphospholipid antibodies?

Sorry to hear your experience. Supposedly, it only occurs during the first treatment. I had my last treatment a bit more than a week ago. My counts are up from 20 to 90 as of today. Prednisone tapering down from 60 and at 20 now. Will continue to taper off.

IVIG sent you to the ER and now your doing Rituxan? Oh my. :ohmy:

You are very brave. Did the doc suggest Promacta or NPlate as safer route, or, you're dedicated to putting ITP in the rear view mirror?

Hahahaha, you don't get Sushi for months.

Counts are up to 90 now? Nice.

Ha! I am such a sushi addict, I asked my hemo about it. He said that Rituxan doesn't effect your immune system to that degree. He said it wouod be fine if it is from a reputable place. I think I will wait a bit though. Lol! Maybe after the holidays.

Thanks for the information. I am looking at starting Rituxan after Thanksgiving. Glad to know some of what to expect during the treatments.

SGabaree1, so glad you are on your way and will say a prayer that things go better for the next infusions and that the results are exactly what you seek.
I am also looking at Rituximab, currently waiting for funding.
I have had reactions severe reaction to IVIG too.
So you can imagine my trepidation going forward.
I wanted to ask if you have any other auto-immune diagnosis than the ITP?
I have several and wonder if that is not what happened with the IVIG.
Good Luck. Sandy Too

For what it's worth, my wife Ellen was hospitalized after IVIG due to drug-induced aseptic meningitis, but for her, Rituxan was trouble-free. She did follow the low-dose Rituxan protocol, which may or may not have made a difference.

But if you cook your sushi, LOL, can't you eat all you want then?

Rob, for me at least, that is reassuring.
About the IVIG and ER. Was the symptom more than a nonstop headache?

Hal, She is a migraine sufferer, but this was something different entirely. The symptoms were identical to bacterial meningitis: severe chills and neck pain and vomiting along with horrible headache. They hospitalized her and put her on several IV antibiotics until her spinal fluid cultured negative and they released her.

Sandy Too,
Thanks for your support! My second treatment did go better, with no bad side-effects. It took 8 hours still since we went super slow, but hopefully it will be worth it. I do not have any other auto-immune diagnosis, so I don't think anything else played a role. The doctors assumed it was aseptic meningitis and I won't be trying that one again. I hope your funding goes through and that its a good choice for you.
-Sara

My second treatment, this past Friday, went much better. It took 8 hours still, but since nothing bad happened they might try to speed it up again this coming Friday. Luckily the Benadryl makes me really sleepy and puts me out for about the first 3 hours, so the time after that goes a bit faster.
My counts are around 200 right now, but i'm still on 10mgs of Prednisone, so we won't know the real numbers until I am off of that.
Thanks everyone for your support and comments.

Hi Rob, I think I was tested for antiphospholipid antibodies, but I can't keep it all straight nowadays. I feel like I have been tested for just about everything though.

Hal9000,
I am really trying to put ITP behind me for as long as possible and that is why we are going this route. Back in June when my platelets dropped to 7, I had a miscarriage and I really want to have a family some day, but I don't want to try again until I have my health figured out. Going to try to figure it out!
Have you tried Promacta or NPlate at all and if so, what were your experiences?

Well, I feel a bit like you. Am willing to take a chance with Rituxan.

As for Promacta and NPlate, those are what was fist mentioned to me (after a Dex pulse) by my hematologist. So, never used them but have tried to learn about them. They target the dose to give one a count of 50. Some women can chime in here but I think those can get one through a pregnancy.

Hope Rituxin works well for you...

Hal,
Thanks for the info. I will keep those treatments in mind and do some more research on them, in case Rituxin isn't succesful. We won't know for some time how well it lasts, but I am hopeful as well.
I will keep you all updated when I know more!

Well, your counts are fantastic with only 10 mg's of Prednisone. Most people would not have a response that good!

My counts are really good! I wish Prednisone wasn't so bad to use long term, but it causes serious weight gain for me and I cannot afford that. I have been tapering off and I know that they will be dropping soon. I am hopeful that the Rituxin will help to keep them up there though.

It's very possible that you won't drop because Rituxan has taken over. At any rate, very few people can sustain counts at 200k with only 10 mg's of Prednisone.

sandi please read your email , and call me please