HI guys, I recently told you that I was to be starting Rituxan soon, well the 20th Nov my RD is putting in the application, but while waiting for this time to come around I have done some research and the side effects really concern me especially one regarding an RA patient who died of the fatal brain disease one can get on this drug. I know lots of you probably think I am being a big baby, but all of the biologics I have tried have caused allergic type responses even Orencia which they assured me would not happen because in the trials they only had one case. But I was the other one!!!!!! Ladies, please forgive me for not reading all the way through, my head is hurting badly right now (sinuses?). Anyway, Janie, I believe the drug you are thinking of is Actemra, but if I were you, I'd be very reluctant to start on a newly-approved drug (not even approved in the US yet) until some time has passed and they see what happens with it out in the field, not just the studies. I hope the Rituxan goes smoothly for you and finally gives you the relief you need! Interesting Info on this thread. Good Luck janiefx
I was maybe wondering if you could tell me which drug it is that has been in the recent Aus and English news as I might try to bypass Rituxan and go straight for the new one, thankyou for any input, regards Janie.
PS. My RA is very badly controlled as per my DRs, and my risk for heart disease is very high and diabetes so I have to try something, I am so confused, help please.
Janie, honestly I would go for it. You desperately need something to work for you and if any drug will do it, Rituxan will.
You have a pre med of anti allergy drugs to prevent allergic reactions...ask your RD to insist in his referral that you have at least 25mg of IV Phenergan or even 50mg in your pre med because that on top of the other ones they use, it is very unlikely you will have a reaction at all. The should also run the infusion through on the long protocal not the short one which means the increments will be increased slowly which also reduces the chances of a reaction. Also you are in hospital literally and will be obed every 5 mins for the first hour basically.
In my experience, I do not regret going for the Rituxan at all.
The only other side effect you may get is you will be tired for about three days afterwards, remember, it is a chemo drug so that goes with the territory.
I wouldn't let one death scare you off from trying. You could get run over tomorrow by a bus, darl, so really the stats of Rituxan related death are no higher than that.
I am happy to share more of my experience if you want me to, just let me know. It is so easy with the DMARDS to worry about stuff that we will probably never experience.
Let me know if you want to know more, sweetie.
Take care. Hugs for you.
Cords
Thanks Cords, the plan is to give it to me over 6 hours, is that the right one that you are talking about? Also they want me to stay in Buderim private overnight because of past problems with new drugs, I was told they will give me antihistamine and pred at high doses, is that enough or should I still ask for phenergan. I suffer with sleep apnoea so putting me to sleep is a bit risky unless I take my nasal mask - God I am laughing now at the thought of the sight of me.......
Janie, ask for the Phenergan specially through your RD and his referral. Tell him you have done some research and have been talking to another friend with RA on Rituxan and this is what my RD does for me to be doubly sure I am okay. They can draw up 50mg and give you 25mg as part of your methyl prednisone/claryntine pre med then have the other 25mg there waitng in case you have a reaction but never once I have the phenergan have I had any problems.
And yes, it is the six hour protocol.
Janie with you staying overnight in hospital anyway as a safety precaustion, I doubt you will have any problems at all. Once you have done it once it won't seem so scary and then probably the following times you can probably go home straight after. You will then know how the drug with react with your body. But definitely do the overnight the first time, at least to put your mind at rest.
Honestly, darl with all you have already gone through with this disease, a Rituxan infusion is a walk in the park. It's a pain to organise but I am sure you and your body can do it.
We go through so much with this ruddy disease and honestly, we could worry ourselves to death over 'possible' side effects we will probably never experience. I don't see you are anymore at risk than using any other of the DMARD's. I mean with Humira it gave me such bad infections I nearly ended up in hospital and frankly, 2 infusions every six months is a hell of a lot easier than pricking yourself every fortnight.
It sounds like your worrying as we do with scary 'next steps' with this disease but trust me, you will be fine so I would make a decision and go with it knowing that you and the docs are taking all pre cautions possible.
It's a lot more fun sleeping through an infusion on phenergan, trust me
Sorry about the loooong post but I thought you needed the information.
Thanks Cords, that is very helpful info, I do appreciate it, I am pretty sure Kerry and the Nambour unit you are talking about is where I had my Orencia infusion, as far as I know, the RD I saw at Maroochy Waters told me that Buderim Private is very experienced also, they gave me no choice on this and no choice about staying, they also said because of such random and wierd side effects on subsequent doses of biologics, that there would be no choice about staying for the first 2 at least. I will definitely phone my regular RD and ask him about Nambour and then the info for Gary, I will talk to you about that when we meet, I am really looking forward to meeting you and I hope we get some quality time together. I am staying at Beerwah that evening so I am travelling down to Bris by tilt train and returning to Beerwah via suburban network so I am not sure what you are doing but we should try and work something out. I may be bringing Liam with me as he is off most of that week due to sport carnivals etc that he can't take part in. See you soon Cords, hope you are coping ok about mum, I will chat to you more about that when I see you. God Bless and hi Nevie
I'd listen to that doctor Cordy, she's a tough old nag and won't take any nonsense from anybody.
Hey Cords, spoke to Dr Nash's secretary this am and then the RN, Buderim hospital has been doing these infusions on and off since 1997 (when Rituximab was first available) and they reassured me they are very comfortable doing them and they have been told by my RD that every infusion will be done there overnight, as anaphylactic reactions can happen and do happen with subsequent infusions too, they believe some people build up antibodies to the drug and then react! So I feel better now about going there, thankyou for your help, I feel more confident now. Hugs Janie.
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