Fed up!

I've had RA for 11 years. It's taking over more of my life. Struggling to work because of pain & fatigue. I've tried all kinds of medication from tablets to injections. In August I started Rituximab infusion. Still In pain which is worse in both hands & feet. Keep going back to doctors & contacting my rheumatology nurse. If I hear you have to wait 16 weeks one more time I think I might flip. Anyone tried Rituximab?

7 Replies

  • I had a round of rituximab last year 25th Jan and 8th Feb which did nothing to help and it was 25th June before I started another drug - tociluzimab. I think you have to wait before you can start something else and they kept saying to me give it a bit longer it might start to work which when you are in pain is not helpful. I think nearly every time I spoke to them I ended up in floods of tears and totally irrational. We have big expectations starting a new drug and hope it is the one and then it is very disappointing when it does not work. Farm

  • I know how your feeling as i have had RA for the same amount of time and at the moment i am flaring at the moment. I not only have ra,but fibro as well. If i get up and potter about and then i am cream crackered and have to sit down and then i fall asleep. I am on mtx and sulpha and steroids with the pain killers as well. I had to ring the hospital and the nurse upped my steroids up to 10mgs from 5mgs. The sulpha upped from two a day to four a day. I also take pregablin for my fibro. I ha\ven't had the infushions so i can't comment on them,but i hope you get some help so you can carry on. Hugs from me.xx

  • Hello Sylvi

    I to have fibromyalgia and RA. At the moment in a flare. 2 weeks ag for postingo started taking Salfaazine but no seeing benefits just yet. I did take pregabalin for fibro but it made me really sleepy and disorientated. I thought I was going mad.

    on Gabapentin now white does nothing.

    its helps knowing there are others suffering from the same conditions so thanks

  • Hang on in there!

    Reading all the posts on this forum makes me realise how varied everyone's treatment is - and the results.

    You are bound to get down and miserable when nothing seems to be working and it takes so long to find out if each one will be the one.

    But there are lots of treatments to try. The next one may be the one that does the trick, so don't give up.

    We don't hear so much from people who have had success and are well controlled, so it does give a false impression that "nothing works"

  • My motto for RA is patience is a virtue!!! I had 3 and a half years of trying loads of drugs and biologics and drips and at last I think I have one that is helping me!!!! Just keep taking the drugs, resting, pacing and then they will keep trying for you until they get you more controlled.

    Have you looked at the Remission wall on the NRAS page. It's inspiring as to what remission means to people. Xxxx

  • Rituximab can take a long time to register in your system. I had my 1st cycle, 2nd infusion, on 31.12.2013 . I didn't feel any benefit from it until April 2014. The intervening three months were not good... all the normal pain and discomfort and a general 'lack of enthusiasm' feeling.... and other problems from the rituximab. All the consultants said that it usually worked quicker than that. But when it did kick in, what a difference. I was originally told that I would feel the benefits in 3 - 4 weeks. Everyone of us is unique and we all react differently. So keep plugging on, it still can prove beneficial.

  • Dear Rachel43,

    Just in case you haven't already seen it, we do have a page on the NRAS website on Rituximab nras.org.uk/rituximab-mabth... If you particularly wanted to speak to someone on the drug, we may be able to match you to one of our trained NRAS telephone volunteers. You can call the Helpline team on 0800 298 7650 or email helpline@nras.org.uk to start the process.

    Also, the Remission Wall that Allanah mentioned can be found here: remission.nras.org.uk/

    I do hope the Rituximab infusions start working for you soon.

    Kind regards


    NRAS Membership Supervisor

You may also like...