Sorry, this is a long post and thank you for reading it.
I have been on the biologic weekly injections ETANERCEPT (Enbrel) for over 12 years. This treatment worked very well for me for a very long time. However, it has stopped controlling my RA since I have had 2 total knee replacement operations last year. My rheumatologist added Methotrexate injection to support the Etanercept after the operations. I add to stop using Methotrexate because it makes me quite ill. She then suggested I should have Abatacept, but my local hospital CCG insists I must have Methotrexate with it. Yet I have read research papers stating Abatacept monotherapy does work. The odd excuse the CCG give is that it is cheaper to use both injections. Frankly, I do not see the logic in that, how 2 injections can be cheaper than one?.
Because I cannot use Methotrexate, ruling out Abatacept, the rheumatologist then suggested infusions of Rituximab, which suppress B cells. Then I received another letter informing me I will have Trixuma infusions. After checking the information on Truxima I was quite concerned when I found out this biosimilar was only licensed on 17 February 2017, so just 2 years ago, and that it carries a black inverted warning triangle indicating that the long term side effects are not known yet. I also read that the depleted B cells cannot be replenished therefore making the patient's immune response ever weaker and the patient is very susceptible to developing serious infections. I have therefore decided I do not wish to have this treatment.
I am very worried because I need to proceed with another biologic treatment, my RA is not well controlled anymore but I do not wish to put myself in a dangerous situation. I have also heard from people who had had Rituximab infusions that they had a very rough and difficult time for 10/12 days post infusion and the same after the second infusion 2 weeks later. Very ill indeed.
I would really appreciate hearing from as many people as possible who have had Rituximab infusions as well as from people who have had Truxima infusions. Where you feeling quite poorly post infusions, and how long for? What were the side effects you had? Has it made you more prone to infections? How did it help, or not? Are you having the infusions together with Methotrexate or without it?
I would appreciate hearing from NRAS support team too.
Strangely enough, although the guidelines recommend the use of Methotrexate with these infusions, the CCG is prepared to let me have these without using Methotrexate. Yet, they won't let me have Abatacept without Methotrexate. It does not make any sense.
Many thanks for reading this long post. Looking forward to getting your feedback.