Medication uncertainty

[Callabag64]

Hi all, well I am due my 2nd ritixamub infusion on Thursday. 1st one did not go to plan, reaction meant only third of dose given. Felt great next day, short lived as was due to steroids given before infusion. The next day, felt like I had been hit by a bus! Still no relief, and had to have 5 days of oral steroids times 2 as in so much pain. My uncertainty is that, I never wanted treatment by infusion, it scares me, once the meds are in there is no way of taking them out, if an adverse reaction occurs. But my consultant felt that with me having “ severe erosive “ RA this treatment would be best for me. I do not want to have the second infusion, Iwould much rather do injections, and heard from a fellow patient that tocilizimab ( hope that is right) has changed her life, and worked really quickly, as little as 2 weeks the literature has said. It is also very like Embrol, which I was on for. 7 years. The other downside is, that if I go ahead with infusion and it does not work, I will have to wait 6 months before being able to try another med. my gut feeling is telling me that it will not work. I don’t want to be negative, but really cannot cope with waiting 6 months, my RA has been out of control for2 years, following pneumonitis, and I mentally and physically cannot take any more.

[Ninaseven]

Hi. You are in a terrible position if you take it and it doesn’t work six months is a long time that be in pain. I was on methotrexate with plaquenil for three years until last Sept with countless rounds of steroids. My body couldn’t take the methotrexate anymore. Doc then changed me to Enbrel injection. However, stayed with it for 4 months and Enbrel did nothing for me. When I returned to RA doc he wanted to keep the Enbrel and reintroduce methotrexate also. My gut told me that was going to be a disaster. I’m glad I went with that feeling and insisted on a different biological drug. After my first injection of Humira I felt like a new person. I was on 40 mg of steroids a day which I hate taking but have weaned myself down to 10 mg a day. Will go to 5 mg next week and then I should be off for a while. So my two cents worth pay attention to your gut feeling. Good Luck. 👌👌

[Suntied]

I had 4 rounds of Rituxan I had steroid before which helped me not have reaction to it. Did well each infusion next day flu like symptoms but

all went well.

[cathie]

Everyone is different so its hard to say much! I've found rituximab very good after having influximab for about ten years. I hope you can find what suits you and takes you out of pain.

[NeonkittyUK]

Rituximab worked very well and after 8 weeks when two anti TNFs had failed. i didn't tihnk you had to wait six months to start another med if Rituximab fails? I am no expert though but have been having Rituximab since early 2014.

[rheumatoidsewer]

Rituximab has been my lifesaver. I know its daunting having the infusion but once it is over you are able to take minimal medication for up to a year fantastic! The steroid infusion is meant to tide you over until the rituximab takes effect and works well. It naturally leaves the body so no "cliff edge". Having Rituximab has made me as near normal as it is possible to be with RA and beats all other drugs hands down. Best of luck to you we are so fortunate to be able to have this treatment many are not so fortunate. And P.S. no nasty UTIs even bigger bonus.