Rituxamab

[orange33]

Hello

Just had third round of Rituxamab. Do any of you carry a card to say you have

had Rituxamab. Been meaning to ask this at the clinic.

Thanks,

[Lolabridge]

I have a card for the biosimilar Truxima. Yes I think you should have one for Rituximab so do ask your clinic. I also have one for Prednisolone.

[orange33 in reply to Lolabridge]

Hi thanks.

I carry a card for Mtx so it did cross my mind about the Retuxamab.will certainly check this out.

[weymouth321]

Hi Orange33, yes, given card by Biologics nurse 18th Oct, when having first of 2 Rituximab infusions + helpline tel no, size of credit card , so in purse

[orange33 in reply to weymouth321]

Hello

Due to have follow up infusion so will ask about this at the clinic. Maybe my clinic don't issue these. Thanks for reply.

[AgedCrone]

Yes..I have a card in my wallet...It has a space to include your Dr’s contact details & the date of your last Rtx infusion...I was given it before my first infusion three years ago.....maybe they don’t issue them any more?

[orange33 in reply to AgedCrone]

Hi

This is my third infusion and at no time has the clinic or Dr mentioned a card.

However I do have Mtx card.

It's possible they don't issue them any more.

I will check this out though.

Thanks for your help.

[Neonkittie17 in reply to AgedCrone]

I was never given a card and I started Rtx in early 2014. However I don’t even get a letter confirming my infusion appointments ..... Loads of issues there re the nurse not putting my appointments in the diary😑

[AgedCrone in reply to Neonkittie17]

I think once you are having successful infusions for a while, & don’t need any supplementary drugs, the aim is to extend the time between infusions.

But as always with this disease no two rheumatologist seem to treat the same.

I get my bloods done & contact my rheumy nurse 5 months after an infusion......& if my rheumatologist agrees I can wait X+ months. Unfortunately though if I go long over 6 months I flare...but my clinic leave spaces for a nuisance like me who mess up their nice neat appointment diary.

Two ladies I see at my clinic are on 9 monthly infusions.

Last time I needed to get an appointment I only had to wait 10 days to be fitted in...I was due an infusion next month, but I saw my rheumy last week & he is happy for me to wait until January.

My aim is to go a year between infusions.....I am an optimist...& my rheumy is very patient!

[GranAmie in reply to AgedCrone]

Great stuff ... I held off for yearly infusion last time but on reflection 9-10 mnths wd have been more sensible :(. Here in N.I they give you a mini leaflet, not as robust as a card, but also added the info to my 'granny phone' - haven't been able to deal with i-phones etc [fat fingers] but a simple Doro 6520 is manageable LOL xx

[GranAmie in reply to GranAmie]

PS !!the phone has an ICE ?app where u input d.o.b. meds, blood group, conditions etc

[AgedCrone in reply to GranAmie]

I just use my iPad...I never hear my cell phone ring...only use it to make calls.....thought of having Rtx tattooed somewhere...then thought better of it!

Maybe if I go bald? 🤩

[sunnyweek]

I have had 7 rounds of retuximab and have never been given a card. I will ask now, hope you get an answer from your clinic, and thank you for asking this question.

I had one for humira when I had that, and also for prednisolone x

[Lolabridge]

I downloaded on the internet the information about Truxima provided by the manufacturer. I recall that it states that you should carry a card. I had to ask for one at the hospital.

[orange33 in reply to Lolabridge]

Hi

Interesting that. Thanks

[bpeal1]

I was given a card before my first infusion which I carry around in my purse. I also put the dates of my last infusion in the health app on my iPhone, along with allergies etc. Health information can be accessed without unlocking your phone and paramedics and a&e staff are all trained to look there. I believe android have a similar thing.

[orange33 in reply to bpeal1]

Hi thankyou for reply.

You are so right about having info to hand ,as it makes it easer for those that may have to treat me in an emergency.

[Otto11]

Hi I’ve had 3 rounds of Truxima & have asked at every appointment for a card but told they don’t have any. Have asked my Rheumy Nurse too but not managed to get one yet.

[Paisley58]

I have just been told by my Rheumy nurse I will be going for my third round soon.

Yes I have a card to carry, they gave it to me when I had my first infusion and every time I go they remind me to update the dates on it; next time you go ask them for a card or ask your nurse.

[Angels-delight]

I don't have a card for Rituxan as with previous infusions. My next infusions 3rd set is next month. I would like to ask if your Rheumy follows up with you between sets of infusions or they leave it to you to contact if you are having a problem. I haven't seen my Rheumy in a year and a half, I wondered if this was the norm. I do have a nurse who works for the company who arranges the medicine and checks to make sure I am ok, changes in my meds etc, so maybe that is why I haven't an appt with her

The Rituxan infusion is working better over the last 6 months which is great.

Hope you are keeping well.

[orange33 in reply to Angels-delight]

Hi

I do have RA but my infusions are arranged by my Nuero Doc as I have Periferal neuropathy. I also see RA doc as well. I get a telephone call from the Rhumy nurse.

It's awkward having a foot in both.

I wish all goes well for you.

[Angels-delight in reply to orange33]

Thank you, I don't have a nurse at the Rheumy clinic as I did when I lived in the UK. I do have my infusions in a room next door so I will try to speak with reception on my next visit. I hope all goes well for you too.

[KittyJ]

I wear an SOS Talisman necklace with all my meds and details in. More visible in an emergency than a card in my purse although I have one too.

[GranAmie]

yes , for biosimilar Truxima - which has helped mightily !!

[Angels-delight]

I found a card in my papers from my Rheumy which I now keep in my purse.

Hope you are keeping well.