Is there any one that can tell me abit about this drug?! Specialist think it's the best thing for me at the minute because now Iv got discoid as well as SLE. In very scared lol and I'm worried about how I'm going to after it and how it's all going to effect my family?! Anyone out there that could put my mind to rest I really not sure whether I want to go through it!

12 Replies

  • Hi I had rituximab in January . I felt a bit groggy & tired afterwards. Everyone is different unfortunately it didn't work for me but meet a lady that's been on it a few years & works for her.I hope this helps you x

  • Come on Lilly, you can do this. You are strong. Its just a manifestation of this dratted condition.

    Please give the meds (and yourself) a chance to work. Have you told anyone how you are feeling? Do you think you could? We all feel like you sometimes but we have to keep going.

    Be brave, stay strong and you will get better.

    Lots of love and gentle hugs are sent to you.

    Babs x

  • Just had my third set of Rituximab infusions and feeling better than I have for years, I know there is quite a lot of scary information about this drug but I have found it quite benign and it has only done good for me, my arthritic stuff which was severe is now under control and my skin problems are much improved.

    Go for it, not everyone gets the opportunity for this treatment but I'm sure there will be benefits for you.

  • Iv read that it's not licensed in the uk?! And that was on the NHS website?! In just scared because I have my 3 young children and can't risk being ill any more I need to get a quality of life back for me and my kids!!! Thank you guys really appreciate it cx

  • Hi LillyAlfie,

    Rituximab is not licensed for the treatment of lupus in the UK, but is actually licensed for Rheumatoid Arthritis. This is the case with most treatments for lupus - only hydroxychloroquine and steroids are licensed treatments, azathioprine, methotrexate, mycophenolate, cyclophosphamide are all used off licence. This doesn't mean that they are not safe or effective for the treatment of lupus, it just means that securing the funding for their use is more difficult.

  • Hi Lilly, Rituximab changed my life. I was very ill in 2009 and have now been on Rituximab for six years. I have it more frequently than most people - every four months - and it works within a very specific pathway to control B-cell related inflammatory activity.

    I was scared too, but trusted, and although I experienced the predicted side effects - increased heart rate, first time rash or flush, I discovered the secret is to insist on a very slow rate of infusion. Listen to your body. Rituximab is given twice with a two week break between infusions. The nurses might suggest you have a faster rate for the second infusion but my advice would be to take it slowly both times.

    I worked with my consultant, writing letters myself, in order to continue to get funding - in my case it was a treatment worth fighting for.

    I am with you in spirit - you can't help being scared, but fortunately Rituximab is given in a very controlled environment so they will take great care of you.

    Good luck xx Shaista (blog: lupusinflight.com)

  • hi I have had this three times and it has been very successful.I still have flares of SLE but not the unbearable pain still get pain of Fibromyalgia and Osteo but no burning pain when you wish you could cut off the joints concerned.I really recommend this treatment

    was with me

    Good Luck. Hope it is as successful as it was for me


  • Hi Lillie

    I had two infusions one June and the other two weeks after in July. I had it because the lupus (Mixed Connective Tissue Disorder) has damaged my lungs and I have ambulatory oxygen.

    I didn't have any side effects from the infusion, I was given peritonitis and anti sickness pills along with an extra infusion on steroids. The piriton is to stop any itching, I didn't itch or felt sick but the piriton (antihistamine) made me very sleepy, I could not keep awake whilst having the Rituximab.

    However I am still waiting for it to make a difference. I also had to have funding and waited nearly three years for it to be given. I am now monitored by Manchester University to see how it affects me and whether I will continue to have the funding.

    I would say go for it, it's not as awful as some of the other drugs and it might make a lot of difference to you and your young family.

    God bless and gentle hugs. Praying for wisdom to make the right decision.


  • Thank you all so much I feel more confident about this now listening to you guys! Im going to go for it! il let you all know how it goes! Thank you all Again xxx

  • I don't have discoid but SLE affecting mainly joint tendons and ligaments. My condition was badly controlled after a major flare 2 years ago despite starting methotrexate. I was nervous about taking the rituximab but it has been the best thing. Virtually no symptoms for nearly 5 months since the treatment in June. Had the two infusions two weeks apart with steroid and antihistamines at time of the infusions to prevent any reactions and was fine apart from feeling mildly flu'y for a day or so after the infusions. Have been really well since with absolutely no side effects. So glad I decided to accept the treatment

  • Thank you all for putting my mind at rest! Start my first session Friday x

  • I just want a quality of life back. Like take my kids to school cook then dinner! I feel like Iv had everything taken away from me and I want it all back! I constantly tired and have to sleep every day for about two hours Iv got constant pain in my muscles and bones and now Iv got discoid on my face! Ever day is a stuggle and I do t want it to be like that any more! I can't thank you all enough for all your words! You have all been brill 😘👌

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