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Medical Forum / Diseases and Disorders / Arthritis / September 2005Rituxan and WTH
Okay, I understood that it was an infusion, but 6 hours? Unreal. Other than being so stiff I could barely move after the infusion (yesterday), I became very light-headed and dizzy (no comments from the peanut gallery :/, it was *worse* than usual). The light-headed passed rather quickly, but I'm still dizzy and it's been over 24 hours. When can I expect the stupid headache to go away? They said I'd feel somewhat sick the day after (today), okay, I am. When will the "flu like" symptoms go away? I realize we are all different, but I could use some reassurance. I've noticed that my swelling is beginning to get out of control on my hands and forearms (they didn't look like this yesterday). So, what the heck is wrong with me? Aside from the obvious, thanks ;). Smokie Darling (Annie) Hey lady, I had some rebound. Those on antibiotics have a word for it which is gone from my head at the moment. Get hydrated and take some pain pills and hold on. The lady I took the Rituxan with had fabulous response while I had none or that rebound. It was discouraging. But about 2 months after it was all over I began to feel much better. My fatigue level is very low and sometimes at 0 many days and that is a wonderful result. My pain level is mostly 3 or below. This stuff has worked for me although it took time. My infusions ran around 5 hours except the last one when I was there for 10 hours. That was four days out of my life and I have received my life back. I think it was well worth it. Hang in there Duckie > Okay, I understood that it was an infusion, but 6 hours? Unreal. > Other than being so stiff I could barely move after the infusion [quoted text clipped - 15 lines] > > Smokie Darling (Annie)  Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) > Hey lady, I had some rebound. Those on antibiotics have > a word for it which is gone from my head at the moment. [quoted text clipped - 12 lines] > Hang in there > Duckie Two months? Oh dear Lord. My rheumy has taken me off of everything except Motrin (and Vicoprofen at night). Says that Rituxan might be used in conjunction with Prednisone, but since I have debilitating headaches with Pred they can't give it to me anymore. I asked about at least being able to keep my Enbrel, and he said no. Whimper, whimper, cry... I'll hang in, but I'm not going to be very nice. I'll try to keep it away from here though. You all are so great. Still have the aches and the headache. Docs on Call knows nothing about Rituxan and how it affects people, so I've got a call into my doctor's answering service. I'll probably hear something on Tuesday (since Monday is Labor Day). > > Okay, I understood that it was an infusion, but 6 hours? Unreal. > > Other than being so stiff I could barely move after the infusion > > (yesterday), I became very light-headed and dizzy (no comments from the > > peanut gallery :/, it was *worse* than usual). ----8<---snipt--->8---- Annie, It sucks that you are going through this on a holiday weekend. I had no idea that the infusions took that long....you must've been stiff as all hell. I hope that you can find some relief soon...I will send some prayers your way. Hang in there, Charlene > Annie, > It sucks that you are going through this on a holiday weekend. [quoted text clipped - 4 lines] > Hang in there, > Charlene Thank you Charlene (and Duckie, I'm so forgetful, I forgot to say thanks). I appreciate whatever help I can get. Smokie Darling (Annie) Well tell your RD to contact Dr. Paul F. Dellaripa at Lahey Clinic [Lahey.org]. I am still on my Remicade and my Arava in conjunction with the Rituxan. Granted I was the first guinea pig in the states to be on all three [actually I think he was worried about being on Rituxan and Remicade so Enbrel would fit that bracket]. Dr. D. has given this to most of his out of control patients instead of changing to a different medication. I think it was the third dose that gave me the most pain and frankly I got drunk that day. Figured since the pain pills had barely touch things the day before I would try a different method. Funny but the next day I didn't have any more pain. Wouldn't suggest it but my RD did give me a script for a stronger pain pill to see me through the last infusion. Are you taking this as part of a study? I was not in a study - just needed permission from my insurance company and they said they pay anything done in the hospital which is where the infusion was given. Anyway, it means my doctor is not bound by any study parameters. Hang in there and DO come here to whine. That is what we are here for you know. Duckie > Two months? Oh dear Lord. My rheumy has taken me off of everything > except Motrin (and Vicoprofen at night). Says that Rituxan might be [quoted text clipped - 17 lines] > > ----8<---snipt--->8---- Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) > Well tell your RD to contact Dr. P F. D at > Lahey Clinic [Lahey.org]. I am still on my Remicade and [quoted text clipped - 19 lines] > we are here for you know. > Duckie I have no problems whining here, you all are so supportive. I worry more about being "snippy", and that doesn't mean cutting out parts of posts (though I do that too). When it gets bad, I'm kind of a wench (okay, not kind of, I'm a SUPER wench!), so I try to avoid the computer at times like that. You know, my doc had asked which physician was prescribing in conjunction with Remicade and Arava (I used your case when asking about staying on Enbrel, though I didn't use your name, since he'd wonder about a friend named "Duckie"<g>). I'll let him know who your physician is. No study, just trying to find something that works. My insurance company said they would pay their 80% (on freakin' $7500+), then Tri-Care said if it's "medically necessary" they'd pay 75% after my deductible. I'm still going to have to set up payment arrangements, but I figure this is worth a try. He's wondering why the FDA has "put off" the approval, since it went before them in June. Once it's approved (don't even want to think "if"), then Medicare will pick up some of it too. Considering my "allergies/reactions", I'm sort of stuck with Vicuprofen (Vicoden with motrin instead of tylenol, had I said that before?). GAG WARNING: It works rather well, but it does have an icky side effect in that the bowel doesn't move (since it sort of "paralyzes" the bowel). When I get find something that "works" to unblock things without causing "explosive" problems, then I'll be willing to take more meds for the pain. I'm only scheduled for 2 infusions (every 6 months I believe). The one on the first, the second on the 15th. Don't think I'm scheduled for anymore than that. I got 1000mg of Rituxan, do you know your dosage? Wow, this has turned into a longish sort of rant, don't you think? Duckie, you have been so wonderful. I can't thank you enough. Smokie Darling (Annie) Have you tried anything like benedryl with the infusion to see if you don't feel so bad afterwards? I have to do that with my IVIG infustions now. This month I took it about 45 minutes before the infusion started. I also asked them to slow the infusion down and those two things really helped. I was only nauseus the day of the infusion and the headache and pain for 4-5 days was non existent like it had been the months before. I know it's a different chemical but the process is the same and it might help! DianeW > Have you tried anything like benedryl with the infusion to see if you > don't feel so bad afterwards? I have to do that with my IVIG infustions [quoted text clipped - 4 lines] > I know it's a different chemical but the process is the same and it > might help! DianeW Hi Diane, They inject 25 or 50mg of IV Benedryl (much better than tablet benedryl) about 30 minutes before beginning the infusion, and they inject 50mg of hydrocortisone after the Benedryl (both of these are in the prescribing info from the maker of Rituxan), they also gave me two aspirin, since I can't take tylenol. Let me tell you, the Benedryl IV burns like an SOB. Normally, I'm pretty tough, but it feels like acid in the veins, and you can feel it work its way up your arm. Not sure they can slow it down much more than it is now. The doc said it could go to 200ml an hour (you start at 25ml for 30 mins, then 50ml for 30 mins, then 100ml then 150ml then 200ml). The nursing staff were concerned about setting it that high, but when it was obvious that I was doing alright (no hives that I didn't come in with, no trouble breathing, no change in my normal arrythmmia - sp? -), they went ahead and upped the speed at the normal intervals. I see the rhuemy on Thursday, and I'll ask him about the headache thing. I'm wondering if it wasn't maybe the hydrocortisone that caused it. It wasn't a "prednisone headache" (thank God), but it's been hanging on for a while. How long does your IVIG infusion take? If the Rituxan doesn't work, that is my next option (oh joy). Kind of not looking forward to Rituxan on the 15th, but at the same time, looking forward to it. Even if it takes a couple of months for maximum effect, that would be nice to feel closer to "normal" for a while. Smokie Darling (Annie) Actually don't know the dosage but I do know he really wanted me to have the last dose after the pain from the third dose. Then I had that reaction half way through and he wanted me to try to get through the rest of it. He said he was having such luck with it. Have your doctor call mine. Tell him my name too -- Caroline Marold. My eye doctor knows me as Duckie but RD doesn't. lol My eye doctor found his name in a post I made when he Goggled himself and discovered a longish post I made about the time I had my eye injected and required a eye photography session just before with an injection of dye by a different doctor. Anyway, the dye missed a vein and well it was a long funny post. My eye man still calls me either Duckie or Mrs. M. Dr. D. is so very nice and will be willing to share. Duckie ...... > I'm only scheduled for 2 infusions (every 6 months I believe). The one > on the first, the second on the 15th. Don't think I'm scheduled for [quoted text clipped - 5 lines] > > Smokie Darling (Annie) Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) |
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