Rituximab advice Please

tillytop

Good Morning!

I know from Janie68s recent thread that both Janie and Eve are on Rituximab and I am hoping that there may be some other Rituximab peeps out there who could give me the benefit of their experience too.

I have been allergic to both Infliximab and Humira and the options which have been suggested to me now are either Enbrel (not keen after probs with other two anti-tnfs) or Rituximab.

I understand that, with Rituximab, you have several infusions quite close together and, if it works, you then don't have to have another until the effects start to wear off. So my question to Eve and anyone else who has taken it for a while is typically how long the good effects have lasted before you have had to have another infusion and what side effects you have had (if any). Also I have read in the posts that a steroid infusion is given first to prevent allergic reaction at the time and I am interested to know if they can do this if someone is already taking quite a high dose of oral steroids. If not, it is going to take me a long time to cut the dose down far enough to be able to have the Rituximab and goodness only knows what would happen to my RA in the meantime!!!!!

I have my rheumy appointment next Thursday and I am starting to get me “knickers in a bit of a knot” so any info/advice would be greatly appreciated!
Thanks!

Love Tilly x

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julie47

Hi tillytop

Sorry I have no advice for you but I do wish you luck for thursday.
Thinking of you
julie pf xx

dreamdaisy

Hmmmmmm. A poser, tillytop, and for good reason. You had problems with infliximab and are thinking about rituximab. Both end in 'mab', that's what is unsettling me. They are based on mouse proteins - that could be the root of the allergic reactions you have suffered in the past. As my GP (from a few years ago) put it, 'Basically Liz, you are based on cat proteins.' You might be cat proteins too. I hope not.

Untwist your drawers and start making notes of EVERYTHING. (One cannot sit comfortably to write with bunched panties.) Note your meds and dosages, note pain/discomfort levels on a daily basis (once every four hours or so perhaps) note the effect of your hot-flush reducing diet (remarkable!), note any mood swings (I'm the crosspatch of the forums today!) anything at all that will give them as complete a picture of you as possible. One of the most burdensome things about this whole malarkey is the fact that although we all have a similar condition we are all affected so differently. There's a sticky about rit somewhere around here - I haven't looked at it but it might have some info.

dorcas

Hi Tilly

I've not been on Rituxiamab...so can't comment on it's use or successes Tilly, sorry.

I can understand your concerns about allergic reactions...especially when that's already been your experience.
...but the docs will not put you at unnecessary risk and will be monitoring you very very closely.

I hope too the rheummy will have an answer to your question about the steroids your on and how that will be managed with the steroid boost they administer with Rituximab.

Write down your concerns and questions in preparation for your rheummy visit and if you can have someone go with you (in addition to us peeps who will be in your pockets ) so that he/she can take notes on what is said! a lot to consider Tilly. but I do hope you do get effective treatment for your arther.

I've posted a link to the web pages of Arthritis Research UK on Rituximab (you can search for Enbrel (Etanercept) too).....which looks really informative and might answer some of your questions it certainly explains how it's administered...

http://www.arthritisresearchuk.org/arthritis_information/arthritis_drugs__medication/rituximab.aspx

hate to contradict our lovely DD but not all anti tnfs ending in 'mab' contain mouse protein... Humira (Adalimumab) for example which I was on and which I think our damsel is currently on too?

good luck with the appointment Tilly!

lotsa ((((hugs)))

Iris x

dreamdaisy

Don't hate to contradict me - I was basing my statement on a comment from my consultant who told me that mab meant mabine and everything ending in mab had mouse within it. She's wrong, you are right, I have learned something and thank you, oh wise one! DD

skezier

Hi Tilly,

I can't help you but agree write down you concerns and hopefully the link will helps as well? Leaving you a cuppa, a (((( )))) and a nudge from the Deer. Cris xx

Iris and DD,

As a veggie I have to ask is it really mouse protein extracted from mice? Could test my resolve eh?! xx

dorcas

Oh Cris!! I never thought of you and all our other veggie peeps.

This is what the literature says ...

'Infliximab is an antibody to the tumour necrosis factor itself. However, it consists of mainly human construction, but there is a small mouse component to the antibody.' (drdoc on-line)



ooopps


Iris x

dreamdaisy

Yes. Real mouse proteins from real mice. Whether they can synthesise similar stuff, I do not know. Hey skez, I have just trooped back from Burger King - they were playing Track 7! DD

skezier

Thanks Iris and DD now here will be a test for me..... Wonder if there is synthetic? its likely to be cheaper as well? Mind I have been told mtx better work as I wont get funding for anything else....... If I do..... I will have to look into my conscience eh?! ((( ))) to you both and DD good to know they are finding some taste at last xx

tillytop

Thanks Julie, DD, Iris and Cris for your messages!

Have been trying very hard to ignore the fact that my appointment is coming up and I will have to start thinking about what to say. But have pen and list at the ready and will start tackliing it over the next few days so I don't leave it til the last minute. Hubby will come with me into the appointment which I know will make things much easier because he is very clear headed and not easily fuddled like I am!

Thanks again!

Love Tilly x

dorcas

Good luck Tilly.....

..... for when your appointment comes round.

let us know what date so we can be in your pocket too.

Iris x

ironic

Hi Tilly Just wanted to wish you luck for Thursday.
Sorry not much help.
Will be thinking of you. Glad hubby will be with you.


Lv, Ix

dreamdaisy

I always take The Husband, and he always makes sure he can be there. He remembers things I am sure were never said! I value his distance from the whole thing. I live it, he remembers useful info. It's a boy thing. DD

dreamdaisy

I've just re-read this thread, as tillytop is off tomorrow, and I note dorcas' bit about a 'small mouse component'. Mice are always small. Would these things work better if big mice were used? DD

tillytop

Thanks Iris, Ironic and DD!

I will think about the big mice tomorrow - it will make me laugh!

Love Tilly x

dreamdaisy

My work here is done! Good luck tomorrow, my lovely tillytop. You have been thro the mill lately, you need some good news and some proper listening to as well. I sincerely hope tomorrow is the day when that happens. DD

dreamdaisy

Morning tillytop, just popping in to wish you well for today: good luck with the parking, breathe slowly and deeply, go thro your list of questions, write down the answers and remember we are all with you in spirit. DD

janie68

Hi Tilly

I have been watching this thread with interest because as you know I have just started Rituximab.

I hope that your questions have been answered at the hospital and that you are feeling more positive.

Here is my current thinking on Rituximab from other peoples experiences and also health professionals.

I have not heard of one person not benefitting from Rituximab. l know 2 people personally on it and they have improved, one even works full time now. the other was wheelcahir bound and now uses one crutch.

Side effects are minimal, I think the only real problem is increased risk of infections.

I have had one infusion where you have in hospital. I was looked after very well and I'm due to go back next week for the 2nd.

You tend to have repeat infusions (in a set of 2, 2 weeks apart) every 6 months or so. It depends when you start to feel worse again. I will be seeing the biologics nurse every 3 months to monitor my progress and continue to have monthly bloods.

You can start to feel the benefits quite quickly, most feel it about 2 weeks after the 2nd infusion, but can be sooner or later. If you don't respond within 3 months then it most likely withdrawn.

I hope this has helped and I hope that you are sorted with your meds today

Good luck Tilly

Janie xx

dorcas

Hi Tilly

hoping all's going well at the rheummy's..... :!:

will be watching and waiting for your return....

Irisx

tillytop

Thanks DD, Janie and Iris!

Janie, thank you so much for your Rituximab information - I am really encouraged by what you have said and will be thinking of you when you go for infusion no 2 next week.

I had a really good appointment today - which is something I really didn't expect to be able to say!

Saw a different consultant who was a real breath of fresh air! He really listened to what I was saying and we had a proper two-way discussion about the best way forward for me. So, I will starting on Meth again in a couple of weeks at a low dose of 7.5 mg and I have a follow up appointment with the same consultant on 30th September. All being well, I will then get a date to start on Rituximab. He thinks that the low dose of meth will give me the best chance of success with Rituximab because it will hopefully help to stop me developing antibodies to the drug. He also understood how scared I was about another biologic drug after my Infliximab and Humira experiences and said that, as a precaution, it might be best for me to stay in hospital overnight after my first Rituximab infusion just to make sure everything is ok.
So I feel much better about everything now and really feel I have a sensible plan for the way forward.
Thanks to you all for your thoughts and good wishes!
Love Tilly x

marion1952

That's brilliant..

Good to hear about a good rheumy appointment!

Very reassuring that you will stay in overnight.

Marion x

tillytop

Thanks Marion!

Love Tilly x