Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi Mouise: I don't know anything about the other meds. you have taken. Lots here do. I just wanted to wish you good luck with your new drug. I hope it is the right one for you, and that it works. All of our meds. are dangerous, but we are all willing to take the chance to feel better, and have a better quality of our lives. Again, good luck. Wishing you many pain free days ahead. Hugs, Barbara > > I just got the news from my Rhuemy that I will need to start Rituximab Infusions on Fri 8/28 & I am scared. Has anyone gone thru this already? Please let me kknow what to expect. My body has not done well with Embrel, Humira, Prednisone & Ariva & my Rhuemy thinks this will be my answer. He did explain about the side effect of the brian virus we all have & 1 million activates after this use. Scary, I but I need to get & feel better. > > Mouise in Calif > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Mousie, Hi there, its natural to be afraid to take any new meds, and I'm sorry to say this probably will not be the last new med you have to take... I started Rituxin Jan. 2008.... The injection took about 5 hours and I felt very drained mentally and physically. The following day I was useless... The same reaction happened on my two week follow up infusion... However, a month later I was starting to ride my bike again and starting to do exercise tapes.. Rituxin was a wonderful med for me... The sad part is that it stopped working after the fifth month and I went back to hell for the remainder month that I had to wait in order to get my next infusion. Needless to say, I Got my " second " infusion this past June, and I was pleased to see I didn't feel as sick as I originally did on the first go round... However, here I am two months into the last infusion, and I still haven't started feeling any better... My doc is actually going to move my next dose up to the end of September or the beginning of October to see if I need an extra boost.. Anyway, other then this last time being a dud, I really didn't experience any terrible un-manageable side affects... Give it a fair chance, Hopefully it will work for you, Please keep us posted on your progress... Bonnie > > I just got the news from my Rhuemy that I will need to start Rituximab Infusions on Fri 8/28 & I am scared. Has anyone gone thru this already? Please let me kknow what to expect. My body has not done well with Embrel, Humira, Prednisone & Ariva & my Rhuemy thinks this will be my answer. He did explain about the side effect of the brian virus we all have & 1 million activates after this use. Scary, I but I need to get & feel better. > > Mouise in Calif > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 , I really appreciate your time and the detail on what to expect when I start my infusuions. This really has helped & I am glad I have such a great support group. Mousie in California > > Hi Mouise! > I have had Rituxan and because of changing RA docs but seeing my new one today, I am more than likely going back on it. I loved it! I mean, I had gone thru all of the drugs up to the biologics, then Enbrel & Humira. But the rituxan!!! Dear - do not be afraid of it at all. I will tell you my experience with it as well as things I've heard from others. > > OK - 1st infusion - the nurses check on you like every 15 minutes or so because any allergic reaction usually comes within the 1st 90 min. (1st time took a total of about 5 1/2 hrs for me). Well, I am allergic to everything it seems but food (hahaha) so of course I had a reaction at exactly the 90 min mark. They temp. stopped the infusion, pumped me full of benadryl and once the benadryl took effect and worked, they resumed the rituxan. 2nd infusion (2 wks later) my ra doc had me take 20mg of prednisone for 2 days prior to the infusion as well as the day of along with some allergy meds. No problem whatsoever. I was a little tired afterwards, but not even the next day! > > Now, I have heard that some people took the day after off as it made them feel flu-ish. Others that were in the same room w/ me getting the same drug, I saw the 2nd time and no one had suffered any issues afterwards. Now, I get every side effect and then some to every single med I have ever taken since diagnosed....I am NOT the ususal patient and I told my new doc today that I wanted that drug again. > > My results from the drug were also not the standard. If I'm not mistaken, most patients take MTX along with rituxan. I can't take MTX - gives me seizures. So, usually from what I've been told and from what I've read, if it's going to work, it works after a few weeks. Well, I saw no change until the 4th month. I woke up one morning - felt like walking and within 1 week, I was walking 5 miles a day! No flares, hardly any stiffness to really complain about. AND it worked for over a year without me having to get another one.. Then of course I had RA doc problems so I just got into see my new one today. You can take the infusions up to every 6 mos. > > Sorry this is long - but I don't want you to be afraid! For me, it's been a miracle drug. I wish he could set me up for tomorrow morning!!! I have had some gosh awful flares the last 6 mos and I'm ready to feel great again!!!!! > Good luck - if I can answer any other question, please feel free to email me direct if you wish! I wish you the best! > in SC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 I started Rituxin in 2007 after about 3 months after Humira got so expensive and my RA Dr. started me in this trial study for it. I had 2 infusions and then was on maintenance for 2 yrs. I qualified for another set of infusion after no response in getting rid of the severe pain and my SED rate was very high. I am on maintenance right now and just get blood work done every 3 months. I still have a severe amount of pain, but if I over do things in my yard or house. I am on a flare up now and have been the last month. I had no problems with the Rituxin. The first infusion lasts for about 8 hours. That includes all the prep and stuff they will do before starting the IV and meds used. I was given a tylenol and benadryl tablet. The IV med will make you sleepy and loopy the first time given. I think though it was just the benadryl. My RA Dr. have recliners in the infuaion room and television so it was quite comfortable for 8 hours. The second infusion is scheduled 2 weeks after the first and it is about 4 hours long. After that the results for me were great. I had my second infusion set in March of this year. I still have not gotten to the point where any meds work completely for me or stop pain. I deal with RA as best that I can with pain meds and limited exercise. I have problems with my joints bone atrifying in my toes and my knees are giving me problems. Even after having a total knee replacement on the right 2 yrs. ago. They fix the bone, but the pain and swelling still goes on. I wish you well with the Rituxin. For some it is a God send. Irish In a message dated 8/25/2009 12:07:08 P.M. Central Daylight Time, pcortas1@... writes: I just got the news from my Rhuemy that I will need to start Rituximab Infusions on Fri 8/28 & I am scared. Has anyone gone thru this already? Please let me kknow what to expect. My body has not done well with Embrel, Humira, Prednisone & Ariva & my Rhuemy thinks this will be my answer. He did explain about the side effect of the brian virus we all have & 1 million activates after this use. Scary, I but I need to get & feel better. Mouise in Calif Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2009 Report Share Posted August 31, 2009 Hi Mousie - Sweetie- since that was your first infusion - the 2nd will even smoother. I think I told you before that some people are a bit tired the next day - but hopefully, things will keep smooth sailing for you! Keep us posted and I wish you the very best - the next few days & the many there after! I hope you see quick & positive results promptly! You are in my thoughts & prayers! Hugs! in SC p.s. Plse keep safe from those horrific fires! We will all be thinking of you as well as keeping you in our prayers! From: pcortas1 <pcortas1@...> Subject: [ ] Rituximab infusions Date: Monday, August 31, 2009, 8:58 PM Just wanted to give you all an update on my 1st treatment of Rituxan Infusion on Friday 8/28/09. Well, I was scared enough & didn't know I was getting this in the Ongology Dept. When I 1st got there every patient there looked happy but they had no hair. I immediately started crying & my husband hugged me & stated this will not be you. Then, I am called in by the nurse & get to pick the room for my treatment. She looked for my orders & stated I would probally be here all day. What! when I was told 3-4 hours only, okay now I getting more nerveous & the nurse says opps! doctor didn't sign orders you need to wait for this awhile now a whole hour has gone by I am a nerveous wreck. Finally, at 9:30am the nurse starts up my IV, explains possible side effects & the pharmacist explains all medication. By now I feel more at ease, at 10:00am they start the Rituxan slowly checking me every 15mins & increasing dosage. Now, 90mins have passed & thanks to God & your prayers I had no side effects or reactions. The nurse increased the dosage to a steady 400cc & I was out by 3pm that evening. So far so good, very little stiffness in hands & painfree. I will say I get fatigue very easy. I do live in near the Calif fires & the humidty is very bad right now. Mousie in Calif. Quote Link to comment Share on other sites More sharing options...
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