Another first round of my 6 mo infusion rituxan | Arthritis Information

So yesterday I went to the hospital for my first set of two 6 month rituxan infusions. I got there at 9am and checked in. They tagged my arm and I had a seat in the waiting room. At 9:30 they called me to oncology room. At 9:45 someone made a decision to have my bloods drawn. So the nurse put in my catheter and took 5 vials of blood. Well, I had to wiat for the lab results before oncology could order the rituxan from the pharmacy. Sooo, I didn't get started till 12:10pm. Altho the prescriptoion called for a starting dose set at 100mg per hour and increased 50mg every half hour until the max dosage of 400mg per hour is reached. 400mg is reached in the last half hour. Oh yeah, They started the dose at 50mg per hour. Nurse said that during some meeting, they were told to start rituxan at the 50mg dose instead of the 100mg dose for the first of the two infusions. So, I was given two tylenol and one benadryl 45 minutes before infusion start. Nothing at 50 mg. At the start of the 100mg, I started to get the shimmy legs or heebie jeebies but not very bad and when I got up and walked around, they kind of subsided. At 150mg, the tip of my tongue felt like it had been novacained and again, a small feelings of shimmy legs but both went away quite quickly. I was done with the infusion and the flush at 4:35. The usual slight sinusitis was my only reaction this morning and happens after every infusion. For those not familiar with rituxan for rheumatoid arthritis:

Rituximab, also known as Rituxan and Mabthera, works by targeting B-cells. The optimism surrounding this treatment is based on its ability to precisely target a specific type of immune cell, perhaps paving the way for other "smart" treatments for arthritis and related diseases, as well as other diseases. The drug is already approved for the treatment of non-Hodgkin's lymphoma.

Arthritis medications, until now, have treated only the symptoms or modified the disease process with a more broad, less specific approach. The lack of specificity can result in killing healthy cells along with diseased cells.

Rheumatoid arthritis is an autoimmune disease in which antibodies are mistakenly turned against the body's own joint linings, causing the joints to become swollen, inflamed, and painful. The inflammatory process leads to the destruction and deformity of affected joints. B-cells manufacture the antibodies which go haywire in autoimmune disease.

So in short, the rituxan actually kills the b cells or as they call it depletes the b cells and thus eliminating most pain. I have gone from 25mg of methotrexate, 20-25mg prednisone and weekly injections of enbrel to just the rituxan and 5.5 mg of prednisone and still weening.

Oh, used to be that they would give the next infusions once the last infusion wore off, (replenishment of b cells), the b cells continue to replenish. Meaning that sometimes the next infusion may not be for a year but now, they just give infusions every 6 months.

LEV

levlarry2010-06-03 17:33:31Lev, hope the Rituxan really helps you. It is the only medication that has really made a difference for me.Hasn't this made a dramatic change in how you feel while it is working?

what is the heebie jeebie stuff about? what causes that? is it expected?

Hey there. I am a Rituxan user for a couple of years now. Good stuff. I did have to have them slow down how fast they gave it to me because of mild reactions. Once they did that I was good to go. I really like the Rituxan. It just wears off on month 4 for me. We are trying to stay to the 6 month schedule but, we will see. Also, in case others need (I did), Rituxan does offer great financial assistance. Anywho, I hope it works wonders for you and you feel awesome. I've been told by the dr. that the 'heebie jeebies" happen when you pre-meds are given too quickly.

That's a super quick infusion! My first of the two is always slower-so the infusion itself starts around 9:00 and doesn't finish till after 4:00. I wonder why some places can do it faster? I would love it if I didn't have to lose a whole day!

Hope the med works for you!

they aren't supposd to give day 1 faster..its against the approved protocalI am fortunate enough to be near an infusion unit that is not oncology. I asked about a unit closer to home but was advised against it since the oncology patients are frequently quite a bit sicker, sad to say. I have had two successful sets of infusions and the next is due in August. I have excellent insurance but it takes them weeks to go through the 'approval' process because of the enormous expense. The unit I go to has wireless internet and I feel well enough for the first 3-4 hours to work on my laptop which is great because I don't want to use up my personal time hours if I don't have to. By about the 4th hour I start getting sleepy. I have been very pleased with the Rituxan and would be happy to talk offline with anyone thinking of beginning treatment with it. Joy,

I have been on rituxan for about 2 years and yes it is a miracle. I had to have surgery during and had to quit all drugs right at the end where the pain is coming back and may I say to those that don't take rituxan that when the b-cells have replenished enough to cause ra pain, it's like every day is worse because the body is cojnstantly making more b cells. Gosh, during that time, almost 6 months, I became aware once again of the pain that ra causes. I had forgotten just how dibilitating it is.

ManGirl, yep the heebie jeebies are what I suppose they call restless leg syndrome. The feeling of crawling bugs otr the need to move your legs. Nurse said that it isn't worrisome, kinda like itchings. And yes I was told that it can be alleviated by slowing the drip. I hope so much that you are doing well. I'm almost ashamed to say that I sometimes avoid your posts. They make me feel so insignificant and such a whiner after reading of your troubles and you always seem to have your humour along with your tales of your trials and tribulations. You rock, rocckyd.

So, on about the third day, I started flaring. This always seems to happen after especially the first of the two infusions. I guess it's from the cytokines and is a possible side effect. The flaring is just about gone now. I will get my second infusion this coming week. Rituxan does work wonders.

LEV

who is ManGirl??? Babs,

This thread will explain who mangirl is. You need to read thru all three pages.

http://arthritisinsight.com/forum/forum_posts.asp?TID=25045

LEV

now that's funny stuff!!

thanks for clearing it up

thanks for bringing that stuff back up :)

I don't think I have it worse than many others. I just tend to ramble on and on. I hide how I feel from most others, and I can let it out here!

We are thinking of giving the Rituxan up. I've been on it a year and a half and it hasn't done much. I hope it continues to be your magic med.

Lev,

Thanks, so much, for your post on Rituxan! I've been trying to decide which new medication I should try next. Thanks to your post, I think I might give Rituxan a shot. After trying Methotrexate, Kineret, Humira, Enbrel, Remicade, and Orencia, I didn't know what I should try next.

Do you happen to know how much each infusion is, before insurance? I just wanted to get a ballpark figure. I want to get an idea of how much it would cost me, out of pocket, after insurance.

I'm so glad that you found something to help you! Thanks, again, for all the information you shared.

Renee

Okay,

Yesterday was my second infusion for this 6 month round. well, I did mention the shimmy legs and the tingling tongue. That was a mistake. None the less, I had quite a wait. I had to have my blood done and wait for the results and then wait for the pharmacy to send up the rituxan. The nurse asked if would be okay to give me my pre infusion meds even though it would be quite a wait. I said yes. So she gave me two tylenol and two benadryl. So guess what? With-in two hours guess what i get? I still haven't started the rituxan. Yep, I get the shimmy legs. Sooooooo, either it's a side effect of the tylenol or benadryl. Now, since I said something about the shimmy leg, the nurse gets a prescription for solu-medrol. Next time, I will keep my mouth shut. I had a terrible night and blame it on the solu-medrol and won't get into the nasty details. But in short, I still feel good and have gone down another 1/2 milligram of prednisone and have broke the 5mg mark.

Renee22, I'm not advocating for rituxan and you should do your own research. I think that rituxan is about the same yearly cost as the TNFs but with only four infusions rather than 52 injections. So probably about 16-20 thousand but don't quote me on that.

Bekka, I wonder if the problem you have with rituxan is that you have so much other stuff going on. I know that even with the rituxan, if i get another infection or disease, I flare and the rituxan doesn't stop those flares. I always know when i am sick or get another infection because i flare. It's like my "I'm sick" indicator.

LEV

Lev

thanks for the info, just had my first infusion and have been experiencing the same symptoms now I feel a sinus infection coming on and like you when I have an infection everything goes haywire and I flare, do these side effects get better with more doses? or is this par for the course now?

thanks again

Mel

I get tylenol, benedryl, and solu-medrol(is that how it is spelled?) prior to each infusion.

Lev...I've wondered the same thing. Is there so much going on that the Rituxan can't stop the flare, or am I flaring cause the Rituxan isn't working at all(does that make sense?). I head down to Duke on Monday to get another consult. My RD isn't sure where to go medwise, so hopefully an additional pair of eyes will help.

Mel,

Every infusion so far has led to instant sinusitis. I will say that with the second infusion of the two infusions, the sinusitis is not as bad and doesn't last as long but none the less, every infusion means sinusitis for me. But, a small price to pay for such big results.

Becca, That's my opinion is that all the other problems you have going on is affececting your immune response. Like i said, every time I get an additional sickness, I get some bad flares. Hopefully good news for you frome the "Duke".

LEV