Rituximab / Mabthera

[philfen]

Just asking a question on behalf of my Mum, yes she has RA as well.

She's not been able to have her second infusion on Rituximab / Mabthera, due to a urinary infection.

Its now been 3 weeks since her first infusion.

Is there a limit to how long the second infusion can be delayed, she's a bit fed up at the moment, just hoping to give her hope that the 2nd infusion can be still be completed once the infection clears up.

Many Thanks for reading

Phil

[AgedCrone]

You need to check with your Biologics nurse, but as I understand it as long as your blood tests are OK after an infection, you can then have the second infusion, but the next course will be dated from the last infusion, not the first.

[philfen in reply to AgedCrone]

Thank you for taking the time to reply AgedCrone, what you say make sense, I'll pass on the info...x

[Stynk]

Hello. I have been on rituximab for a few years. Last year I was dropped to 1 Infusion each cycle. It’s still very effective at that dose for me so would not worry too much it does take a bit longer to kick in.

[philfen in reply to Stynk]

Thanks Stynk,

That's nice to hear, will make me mum feel a little bit bett about it.

Phil x

[Hidden]

You may find the Medicines in RA booklet from NRAS helpful in answering your queries on medications but the first port of call should be your mum's specialist nurse or consultant.

The initial dosage of RTX is given in two doses but after that it is one dose so it is considered a loading dose. It will very much depend on the amount of time that elapses between first and second dose but hopefully even after the first dose she should be obtaining some benefit? If you'd like the medicines booklet sent to you just call NRAS on 01628 823524 or order online at nras.org.uk/publications or email [e-mail]

[philfen in reply to Hidden]

Thanks clare,

But it take forever to get a reply from her nurse, if at all. Just wanted to get some first had experience of the situation. Hard to find any details of my mums specific problem, but will get a copy of the leaflet for her.

Regards Phil

[GranAmie in reply to Hidden]

can nyone tell me what to take to the ward when i go for 1st rtx next week; should i bring nightie etc , in case. or just kindle, books, snacks?

[philfen in reply to GranAmie]

Hi GranAmie,

You've posted your questions as a reply to one of my threads.

You won't get any replies doing that.

Repost your question on its own, more people will see it.

Think my mum just took books and snacks, she was just sat in a chair during the infusion.

Regards phil

[GranAmie in reply to philfen]

ooops! thanks Phil !

[ebony4ivory in reply to GranAmie]

I am on the rtx to. I have mine every 8 weeks. No need for a nightie you wear your normal clothes with short sleeves. I normally take snacks and some lunch or dinner. Maybe something to read or do ie crossword. It can be a bit boring sitting or lying there. I would ask a friend to come with me.

I hope all goes well next week take care

[GranAmie in reply to ebony4ivory]

thanks, that's helpful!. They told me infusions over 2 days, 2 weeks apart and then nothing for between 6 months up to about a year??

[Hidden]

As Clare says, the Medicines booklet is ver informative. I have a copy and dip into it often.

[philfen in reply to Hidden]

Thanks, I've had a look online at it, I'll get me mum a hard copy, at 83 she doesn't do online,lol

Regards

Phil x

[SassyBoo]

I’m currently waiting to see if I can have the Rituximab as I have tried Methotrexate both tablets and injection which later caused Cavitating Pneumonia. I am currently on Mychophenolate and Hydroxychloroquine. I was on steroids daily but I have stopped taking them to have urgent knee surgery. I have Connective Tissue Disease and suffered a bad flare up of Dermatomyositis where all my muscles broke down and I lost 7 stone. I also have Interstitial Lung Disease as a result of all my rheumatic diseases 😭

[philfen in reply to SassyBoo]

Hi SassyBoo,

I wish you every success with getting to try of the drug, been working well for my mum last couple of years, she was in very bad way a few years ago, so there always something round the corner that could help.

Regards Phil x

[Gwara]

Hi there in answer to the 2nd dose I had mine after. The infection was clear but given a lower dose to make certain they didn’t wipe out my igm which was low hope this helps and thankfully they didn’t go ahead with ya mums 2nd dose which would have made really ill

[philfen in reply to Gwara]

She was at the hospital last Friday waiting for her second infusion when they found the infection, so a wasted day, and still waiting for a new appointment.

Thanks for the info, much appreciated.

Regards

PHIL X

[kikolee]

I'm not sure I've never had to go more than 2 weeks I would ask the infusion people or Dr. The stuff does work it has helped me a while lot I have had 3 sessions so far scheduled for my 4th in nov. Tell her to hang in there

[philfen in reply to kikolee]

Yes indeed, it has been working for my mum as well, but the nurses didn't make it clear about what would happen with regards to the delay in the second infusion.

Thanks for taking the the to reply.

Regards

Phil x