Rituxamhab infusion and steriod. i have had my 2nd infusion tues gone. i feel awfull my joints are painfull i feel like i have no energy, my knee has swellled up. I have this noise in in ears that wont go away. Also my waterworks has crazy up 6 times in the night.
HELP !!!
I have had three cycles of Rituximab so far and the last one did not go so well. I would advise you to contact your Rheumy Nurse asap if you are worried. If she is not available contact the Medical Day centre sister and explain your side effects. I found that I needed to get my infusion done slower (over 5-6 hours) to avoid problems. The day of the infusions I went to bed for a few hours when I got home to rest and my body ached and hurt big time.I did feel very weary for the first week after last time and it got better slowly but I'm no where near as good as I was on my first cycle. Please just rest until you can contact your Rheumy Nurse and get her advice but don't worry (hard I know) as that will exasperate symptons. I'm sure your body is just adjusting and my Rheumy said that it may take 4 months to feel the benefit of the infusions. I thought it was a miracle drug & expected to be feeling great immediately (I didn't) so I know exactly what you are feeling now. Try not to worry and put your feet up and give your body a chance to adjust. Good luck. Sue x
Thank you. my first infusion was done slow over 7 hours as i was getting a very bad throat and chest. But the 2nd was different nurse she didnt seem to be as caring, she just wanted to get home and i think she rushed it threw. The steriod i think effected me and i couldnt sleep for two nights, and felt restless and had leg cramps. Yes i have heard a few people said its wonderful. But suppose we are all different. just hope this feeling passes soon.
julie x
Hi, I had my 1st course of rituximab 10 months ago and another infusion a few day ago. It took 4 months before i felt better. I has made a big difference to my mobility etc. I really didn't think it was going to work and i didn't feel good at all during that time and i needed steroid injections during the first months. I don't feel too good this morning, my head feels strange but i think that may be after having the infusion a few days ago. Some people do feel the benefits much quicker.
Good luck x
Hi there I am on my 5th cycle of rituximab, the 1st one they have too slow down as I am really quite rough it's as though somebody as just thrown a cold at me, and when its over feel like I have been hit by a bus.
The second is never as bad as the first, so they can get done quicker.
Then because of the steroids feel like a whale on speed and don't sleep to well for about a couple of weeks.,
Then for the next couple months get terrific pain in my shoulders and neck which really gets quite unbearable and really drags me down, then start to feel a bit better.
I too thought this was a wonder drug and really thought it would be better than it is.
I suppose weighing it up when I have got through the 1st couple of months do feel better and am more mobile, but then I have this good feeling for about 3 to four months, with only a few flare up's in between and then have to go through it all again.
So Good Luck
Love Jan xx
Hi Jan, I was so pleased to read your reactions to the Rituximab as they mirror mine. I thought it was me not doing well on this drug as I read that so many people feel like they have had a remission - I wish. I have discussed it with my Rheumy nurse and she wants me to hang on a little longer as she thinks the drug builds up with each cycle you have.I've had 3 cycles - I must admit that I have a steroid depo jab to keep me going as I feel so frustrated at not having that instant "fix." I have tried anti tnfs etc to no effect and hoped this biologic was the one. I'm seeing consultant on 3rd May so keeping fingers crossed the news is positive. Trouble is the Rituximab infusion seems to correct the bloods and they just say that it all looks much better but I know I don't feel it !
Good luck xx
I only had my first course of Rituximab i March, but I feel worse than before. My joints are more painful and I also have now stated getting pain in my neck and shoulders which I did not have before. Also pins and needles in my hands and wrists. I am seeing rhumy nurse tomorrow and I am hoping and prying for a jab to ease the pain. My appointment with the doctor was cancelled for July and moved on to November 
I dont know how much longer I am able to work, already cut hours.
Hi Ozzy, know exactly how you feel had my first lot of Rituximab end of Feb and 8th March, have just finished the steroids, I was on a low dose of 7.5 mg and didn't feel the benefit then but now I am worse than ever, shoulders, neck, elbows, hands, I have a huge swollen left knee which I've had on and off for nearly a year, I was really hoping that this infusion would work quicker as I too work and have had my hours reduced to 25 per week but just getting out of bed and getting ready for work is a nightmare, don't know how much longer I can keep doing this so I totally sympathise with you, let me know how you get on with the rheumy nurse I'm not due to go for another month!!!!!!
I really feel for you and everyone we have to put up with alot.. my writsts are hurting more than anything, and my neck to. I had to give up work as i couldnt get through the day, and kept phoning in sick. I read about people who are in work and are fine on the biologics drugs, i know we are all different. but i live in hope if this ritux works, i can go back to work and hopefully lead a better quality of life. I had alot of appointments cancelled the last two years, and then it just drags on and on. Good luck with your rhumy nurse tomorrow, and say what you feel, and how your not coping. x
Hello guys, hope your all ok and not in too much pain today . I had my first cycle of rituximab last Thursday. 6 hours at the hospital and when I left I felt exhausted.. Like many of you I could not sleep that night probably due to the steroid injection into my bottom the week before then the steroid infusion on Thursday plus the 7.5 mg oral steroid I take daily. I feel like the Incredible Hulk, only I can't move as fast as him. I've suffered with wandering leg syndrome since the infusion and terrible face flushing... I go for my second infusion on the 25th and am not looking forward to it at all . Do I have another steroid infusion along with this?.. I failed on 2 other biologics (humira & enbrel) so am really hoping this works. Stuck in bed again today with a really stiff neck and my wrists are still not right I really hope things improve soon as I'm at my wits end. I would give anything for a good nights sleep.... Soz for the ramble but can so understand how you guys feel x
Hi, After having read over the above posts i am wondering if having a sore neck, as a lot of you seem to have had after the infusion is a side effect to the ritximab. I had my infusion last week and i felt as though my neck was broken yesterday, it is a bit better today thankfully. It can takes a number of months before rituximab becomes effective. Hope you are all feeling a bit better. x
I saw the nurse today and she was very good. She has been asking people who have the ritimab how the the infusion went and any effects afterwards. She told me that she had found that a lot of people seemed to ache more than before after the first dose. The second infusion six months later the side effects are no so bad. Also 3 months seems to be the standard amount of time for it to start working. So nice to know that somebody is looking into how we cope afterwards. She spent over an hour with me! Also got the doctor in to put me onto yet another drug azathioprine this time, which takes upto 12 weeks to work, so no pain free time for me at the moment. She also sent me for upto date xrays, bloods and she is trying to get me an appointment with an OT to see if splints will help. WOW i feel that I have been properly processed this time. She also mentioned NRAS and I put in a good word for the helpline
It is so nice that there is somebody out there willing to go that extra mile to help us.
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