rituximab

[mille]

Hi, I am just wondering if anyone else has been on rituximab and not shown any improvement. I got my 1st infusion 8 weeks ago and the 2nd infusion 15 days later, i don't think it has helped any and i have already tried enbrel before that without any success. I would be grateful to hear from anyone else who has tried these biologics without much success and if they eventually found something that did work. Also if anyone knows how long you have to wait after rituximab to try another. Thank you. millie x

[helixhelix]

Hi there, I don't take it so can't tell you from my own experience. But if you put rituximab in the search box in upper right corner of the screen you'll get quite a few blogs from people who've taken it. And from that it seems that it can take several months to really get going, and work fully.

Anyway, good luck, hope it starts to do its job ASAP. Polly

[mille in reply to helixhelix]

Hi Polly, thank you for responding to my question, i really appreciate it, hope you are well. x

[Judi]

Hi Millie, I've now had 2 cycles of rituximab. My bloods after the 1st cycle showed that I was responding which is why I have had the 2nd cycle (8 months appart). Although I still needed pain killers after the 1st cycle.

A few weeks before I had the 2nd cycle I had a steroid injection, I was hoping that when that started to wear off, (after about 6 weeks), the rituximab would kick in. I didn't need pain killers the 2nd cycle and have only just started taking them again. So maybe the rituximab is helping, although the response is pretty minimal and I don't seem to have had a drastic response yet.

I was on humira before the rituximab but had to come off of it due to side effects.

I don't know how long you have to wait between the various biologicals other than I had to go through the process again of being funded for rituximab instead of humira.

I was told by the nurses giving the rituximab infusions that it may not start working until about 12 weeks - so don't give up hope because it still has time to work for you. I have been told that there have been good responses to it.

Judi

[mille in reply to Judi]

Thank you very much for your reply Judy, it is really appreciated. You have given me some hope that it may still work, i just thought by now i would be a lot better. I have been told to continue with all the other drugs that i take, mtx, suphasalazine and plaquenil, i also got 2 steroid injections 2 days before my 2nd infusion and it has obviously worn off now. I am just thinking that if there is not a great deal of improvement before the next course then i dont know if i would have another, especially with the risk of pml, albeit it is a small risk. thanks again and hope you continue to feel better. x

[Mark-1411]

Hi

I started about the same time as you and to be honest i'm wondering if it will work, i have not had any kind of improvement, i know they say it takes times, maybe after taking several treatments and those not working its made me sceptical, you would think you would see a gradual improvement after a few weeks if only slight. I was told you can have a massive flare up and those who did seemed to respond better to the drug, i just feel worse, its actually the first time i am thinking i may need to give up work but financially i can't afford to but my body is screaming otherwise, so if this drug is going to work i wish it would start now lol.

I would be very interested in how you progress seeing we started at the same time, i was thinking it was just me that these happened to..

Good luck

Mark

[mille in reply to Mark-1411]

Hi Mark, sorry to hear that you haven't had any relief from rituximab either. Judi has given me some hope now by saying it can take 12 weeks to work, lets hope that will be the case. I will let you know in a few weeks if there has been any improvement, hope you feel better soon. x

[Victoria-NRAS Partner Moderator NRAS]

Hi Mille

Sorry to hear that you are not feeling any better on the rituximab, but it is very early days. The Summary of Product Characteristics for this drug suggests that you wouldn't necessarily be expected to feel better until 16-24 weeks after the course of treatment (i.e. the 2 initial infusions). That means that it could take up to 6 months to get real benefit. Having said that, I have spoken to people that felt benefit earlier than this, but with most of the RA drugs it can take a good few weeks to feel the benefits. It also seems that the 2nd cycle of infusions is often more successful, so it's still very early to say whether this drug is right for you or not, and hopefully you will start to see improvements soon. They leave at least 6 months between infusions, so at that stage would probably be looking to decide whether or not this has worked, and either administer the next cycle of infusions or look into other treatments depending on how things progress.

I hope that helps!

Victoria

[mille]

Thanks you so much for your reply Victoria, it has been very helpful and it has given me some hope that is may still work. x