Starting Rituximab infusion Thursday and I'm scared

janie68

Hello everyone

Well after an absolute dismal time with enbrel, it didn't work at all, I am to start Rituximab on Thursday. I'm absolutely petrified really. The possible side effects and after effects that I may endure make me feel out of control and I hate that. But then the RA is out of control.

I am very nervous about it all. What if it doesn't work? I have my job as a nurse to think about and my life has come to a stand still. If it doesn't, then I don't know what I would do. I do try to stay positive and it's hard to keep doing that. Especially when all treatments so far have not worked. I expected great things with the enbrel but to no avail. I am cautious with this new treatment. I have so much riding on this, it's just no fair!

I then think yes it will work wonders and I'll get things back on track. I can't walk, can't dress myself, eating is a chore, it gets cut up for me and I have to believe

Please wish me luck! Your support will get me through

Love Janie xx

skezier

Oh Janie I wish all the luck out there that it does work and you don't get the side effects.

I am not on it but when I go for my drip I meet a few people having it and I promise you I have yet to bump into one who said it doesn't help.

Being scared is normal I think but you will be fine and get a jacket with big pockets cus we will be there with you as well.

Sending a ((((( ))))) and a bucket of hopes as well as all the luck out there. Cris x

robertls

I'll be in your pocket Janie........

Mind you why I would want to be in there with all these 'glowing' women, I've no idea..........

Be there in spirit for you........

Rob x

marion1952

Hello Janie

I can understand you being scared of starting a new drug.. I will be thinking about you on Thursday and really hoping it sorts out your symptoms so you can get on with your life again...

Take care

Marion

dorcas

Hi Janie

I've not been on this drug but really hope that it will be effective for you..and kick arther into touch.

It is difficult and worrying to be starting something new, especially these powerful but well trialled and worthwhile drugs. I'm sure you'll be well looked after while you're in hossie for the infusion and carefully monitored after and between 'sessions'. Do you know how often you'll be having the infusions?

Good luck with this Janie. I do hope all goes smoothly and you get a great result.

iris x

ps. I'm starting Infliximab infusions... on Thursday too, I will be thinking about you and sending you positive vibes.

ironic

Hi Janie,
I know you must be so apprehensive for Thursday. Too many knock backs for you already.
But this could be the one, and you will be in good hands.
Will be there with you.

Loads of hugs,

Ix

dreamdaisy

There's no point in being terrified. Unsure, uncertain, possibly even unwilling yes, but scared? That takes too much energy! Instead conentrate on being positive. I now take the line 'This will not change my life but it will help matters.' I think we have too high an expectation of these drugs: they are not cures, they alleviate symptoms, that's it. The humira has worked wonders in terms of my inflammation levels, but that's it. The pain is still there, my mobility has improved a little, but I still flare and I'm still propped up on steroids. Some people, however, do have remarkable results on these drugs, and I really hope you are one of them, janie68.

It's not the despair, despair I can handle. I can't handle the hope.

That's a mangled line from a John Cleese film and I think it sums up our various situations well. Take care, rest, don't fret, we'll all be with you in spirit and we are WILLLING it to be the one for you. DD

shiningstar

Hi Janie

I really do feel for you. I think everytime we start a new drug there is worry and anxiety, I've tried MTX, Hydroxy, Leflonomide and now Sulfa and I have agonised over all of them. I just know that the build up to starting them is never as bad as the reality and when you are so down and in so much pain anything must be worth a try to regain your life. RA robs you of quality of life until you are able to get it under control and that is what we are all stiving for.

I wish you luck and please let us know how you are geting on. Anti TNF's would be the next step for me if the Sulfa doesn't work so look forward to hearing of great results from you.

Love SS

skezier

Morning Janie,

Just leaving some more good lucks for you. Cris x

woodbon

Hi I don't have RA, so its not a drug I am familiar with, but I wish you all the good luck in the world. Knowing the side effects is something of a mixed blessing, for me anyway, but hopefully you'll soon get used to the idea when the drug starts to work.
Love Sue

carola

"Worry is interest paid on something before it is due."

Cannae remember who said that quote but 'tis true!

I wish you lots and lots of positive thoughts that this will be the drug that works for you.

I really hope that we will be reading a post from you detailing your success with this med. soon.

Thinking of you and anything I can cross I have crossed for you.
Carol

dorcas

Great quote Carol

good one to remember.

Iris x

janie68

Thank you everyone for your lovely messages, it's great to know you will be in my pocket on Thursday. I'm taking my music, magazines, paper and my book to keep me occupied.

I really hope this is the one for me, and that your experiences of others having the same treatment as well boosts my confidence. Still nervous though!

Iris, good luck for Thursday, I'll be there in spirit for you. Lets hope the IV works for us. I daresay we will be having a sleepless night Wednesday night. Got to be there for 8.30, that's a shock in itself!

I'm going to sort out my jacket of many pockets, please feel free to bring snacks with you, it's a long day

Love Janie x

tillytop

Hi Janie

I don't know if this will help you at all, but I have been researching Rituximab because it may well be my next drug too. Apparently whereas the anti-tnfs like Humira, Enbrel, Infliximab target the body's "T cells" Rituximab targets "b cells" so works in a completely different way. So just because you have had no joy with Enbrel, doesn't mean that Rituximab won't work for you. Having had a nightmare time with Humira, I was encouraged to note that the list of potential side effects for Rituximab is minimal, in comparision with the anti-TNFs (as far as I can see, mainly increased infection risk) and, given that I have been allergic to both Humira and Inliximab, I am hopeful that Rituximab might be a better option for me too.

Will be keeping everything crossed for you on Thursday Janie - and for Iris too for her Inflimab infusion.

Love Tilly x

evelf47

Hi Janie,

To reassure you about Rituximab. I have been on this for 3 years now and the infusions have been fine for me. It is scary to have to take these drugs when we dont know the long term affects but the alternative is too unbearable not to try them. I was virtually a cripple and had tried just about every treatment .The Rituximab has made a huge improvement to me. You will be very carefully monitered while you are having the infusion and the nurses where i go are always lovely and give me drinks and lunch. It can sometimes be a long day thing if they are busy so take a book or magazine to pass the time. Although sometimes there are other people there to chat to.
Good luck.

janie68

Many thanks evelf47

I am much more optimistic about the Rituximab, I have not heard anyone that has not benefitted from it. I just want to get it started, as I do plan to go back to work at the end of next month if I'm well enough. But I think the IV steroids will help as well to get things moving as it were.

Thank you for your advice, I am stocking up on mags, etc, it's an excuse to buy the O*! mag, full of rubbish but essential don't you think?

Janie

roses1

Hi Janie,

Try not to worry (easy to say) hugs (((()))))) take your mind off it with a daft dvd or 3! lol stick some cartoons on!!

Hope it all goes well for you Thursday, I can jump in your pocket and bring cake so you will be able to have a nibble if you like. Have you any prefrences? Choc, Coffee, sponge?? i will bring a flask of coffee if there is room?....


Rose x

janie68

Rose

Please do come in my pocket. Choc cake preferred but any cake really. I'm more of a tea girl though Rose! See you Thursday then!

Janie

tkachev

Hi Janie, Good luck and really hope it gives you much needed pain relief...

elizabeth x

roses1

Hi Janie,

I do like a cuppa but i dont think it does well in flasks do you? Choccie cake it is then

see you thursday you will be fine!


Rose x

janie68

Go on then Rose, coffee it is then but not too strong!

Hope you managed a good sleep tonight

Janie

dreamdaisy

Oh dear, janie 68, perhaps you didn't have much sleep yourself. Just popping in to wish you well for tomorrow. It will all be fine. Keep calm, think positive thoughts - remember to take something with you to read or listen too. DD

janie68

DD

I don't sleep very well as a rule, Arthur is to be blame!
Yes I bought 5 trashy mags yesterday & will take my music, the nurse said 6-7 hours for tomorrow but then it'll be less in the future as the infusion can be pushed through quicker
Janie

dreamdaisy

Yup, that rings a bell. They do the first one cautiously, and keep checking you, in order to ensure that there are no mishaps/reactions. It will be a long day but you will be cared for - it's a chance to let the world go hang and relax! That's how I view it anyway. I miss infusion teatment: it's much more pleasant than fortnightly stomach stabbing, either your own or, as in my case, with a small, rather agitated spouse in attendance, DD

dorcas

Good luck for tomorrow Janie

enjoy the trashy mags and hope you get lots of tea and biccies to see you through your hours of treatment.

fingers are crossed for you so much they ache! here's to it being successful treatment.

Iris xxx

janie68

Thanks Iris, yes I bet the tea is rank but never mind!! I am taking my own snacks

Janie

xx