Hi I have diffuse systemic scleroderma and RA.
My consultant wants to start me on Rituximab infusion, which will take place over a week but I’m concerned about the side effects and implications for daily living.
Can anyone advise of treatment that works for you. Or the benefits you have experienced with Rituximab.
Thank you
If you type rituximab into the search box and filter for NRAS then all the past posts about it will come up, there’s quite a few 😊
Thank you I saw at the bottom after I posted the previous posts relating and read through them after.
Thanks again x
It’s my wonder drug! It’s the first drug that’s worked properly for me (I failed on all 3 DMARDS and one biologic first) and my R.A. is now stable and disease activity is fairly low.I have had no side effects and it has made living independently possible again. I had my fourth cycle a couple of weeks ago and the effect has been cumulative with each one. Your consultant has recommended it for you then obviously feels it’s the right treatment for you.
I hope it will work just as well for you. 🤞🏻
Thank you I’m just really scared of the chance of the jvc virus.Can I ask what DMARDS you tried?
My joints are really sore for sure and I’m getting worse.
Thank you
I tried hydroxy, Sulfasalazine and methotrexate and had bad reactions to all three. Then Benepali (Etanercept) which did not work well enough. Yes Rituximab does probably make us more susceptible to Covid but uncontrolled RA is a greater risk. This was confirmed in the NRAS Facebook Live session yesterday by Dr Lizzie McPhee of the BSR and will be available via their website for you to watch.
I’ve had both my AZ jabs and am continuing to be careful who I mix with and where but so are most people!!
Thank you that’s useful but really it is the jvc virus I’m really concerned about. Did they tell you your risk?
No because no one knows. There is no data yet. Watch the Facebook live session I mentioned it will reassure you.
Thanks I talked to them today and will watch the video x
👍🏻
Being scared of starting any new drug is understandable......but if you read the info leaflets you are given before you have a Rtx infusion you will see the % of people having a MAJOR adverse reaction is miniscule.
What do you mean you will receive the infusion “over a week”?
The usual time scale with RA is to begin with one infusion followed by another two weeks later....then depending on how successful it is - your consultant decides on treatment dosage & the time scale.
I have been on it for 5 years...& now only need one infusion every 6/7 months .
It took 16 years of waiting & it has given me my life back!
It is the most convenient drug I have been on in 20+ years.
Before you decide .....ask your rheumy nurse to explain why your consultant has decided on Rtx......once everything is explained you may feel more confident.
Thank you.I’m trying to speak to the rheumatologist nurse now but only get the answer phone.
I want to decide before the date to allow someone else that place if I choose not to. I don’t know why I’m having it for that many days, perhaps because I have Scleroderma too?
Of course it's normal to be a bit anxious about starting any new drug. But if your RA is not under control it will be doing irreversible damage to your joints and organs and there's definite evidence you will be at greater risk from the coronavirus. Those of us on Rituximab have weighed up the various risks to us and I think you will find that most of us want to continue our treatment because of the amazing relief it has given us and allowed us to have a relatively normal life again.
You have to have bloods etc before you start infusion so most places neeed a week or two..you don’t just go in....in fact you get “naughty” letters if your bloods aren’t in in time!
I’ve had blood work and am back again today as they missed one x
I’ve had several cyclists of rituximab over the past 5 years. No side effects,, careful checks while it’s being administered. It’s made a huge difference.
The effect on my daily life has been very significant because with Rituximab now I can do all these things that I could not before:
I can walk again
I don’t need to use my stairlift
I can get in and out of the bath and shower
I can brush and style my hair
I can dress myself
I can prepare and cook my meals
Some light housework and gardening
Drive my car
....
And I’m not experiencing side effects!!
It has worked magic for my mobility.
Please tell me how you get out of a bath! The last time I tried ended up with a very undignified bellyflop over the side ...cushioned by the bath mat🤯
Bad luck AC! Yes I do it very carefully!! Mostly I use my walk-in shower 🚿 as it's easier and saves water. But every now and again I enjoy a long soak. 🛀
Think I will preserve my dignity and stick to showers!
👍
You may find it helpful to actually talk to someone who has been on rituximab. If you would like NRAS to arrange a phone call from a trained volunteer with experience of being treated for their RA on rituximab you can request a call via the Here4U service nras.org.uk/resource/here-f... or call our helpline on 0800 298 7650
Really useful chat today, I am delaying until I have all the facts and options x
Thank you I will ring now x
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