Anyone had a quickish response with Rituximab?

[Neonkitty59]

I say this as I know it is documented as not being such a fast worker due to the way it is administered. I have done some research as to how one receives it etc (to the disdain of my rheumys!!) but I refuse to go unresearched into such a medication. I saw it documented that it usually takes 50 days .. two months .. for noticeable response (I know we are all different .. I responded very well to Enbrel just two days after but after five weeks it went downhill. I am on Humira since mid August but not enough response to it and my ESR high (was 85 in December, now 67, and fingers and knees swollen and stiff.) As 2013 was a year of very little success with the two anti-TNF's where I watched my fingers become quite deformed and my knees lock up and spent too much time in bed in pain, I am anxious to wait so long between the initial two Rituximab infusions till the six monthly one. Worried I will go so downhill again. I have just been given hydrocortisone injections to my hand and a general one too but they won't last beyond two.three months and I don't think I will start Rituximab until March. Has anyone found it works faster? I don't like to be impatient but after hoping for results with the two anti-TNF's last year it is so so disappointing. Many thanks. Neonkitty. x

[allanah]

Hi neon, you are having such a long time of problems. I wish it would work on day one but mine didn't work quickly. I was told it would take a few months but I did see many people having great results with it, so fingers crossed this will be he one or you hugs Axx

[Neonkitty59 in reply to allanah]

Hi Allanah, thanks for your reply. I am just kind of used to it now for a couple of years trying to find what will work and getting patched up on steroid injections. Sulphasalazine worked great for 8 years then MTX too for another 5. Then all a bit hit and miss. I hope Rituximab is going well for you if you are still on it. Sorry I have lost track of what people are on. The consultants does not want me on oral steroids but will inject the problem joints with hydrocortisone as they need it and providing not too many. I know there are steroid infusions given at the same time as the Rituxi so hope they will tide me over. With waiting for a result of something working properly some joints have got much more damage. Hopefully Rituxi will halt that. Hope you are well. Did I read you had hand or arm surgery? I hope it has been very successful for you. Lots of Love xx

[mille]

Hi, I have had 3 courses of rituximab and the first course took 4 months to work for me but I do know that many others have had a much quicker response. I had to have a course of oral steroids while waiting to start it as I was in so much pain. I had been on Enbrel for over 3 months and I actually got worse while on it. I think you have to think long term, if the rituximab helps then it will be worth the wait. It has made a big difference to me. There is another infusion that you can get monthly and that works quicker so see what the hospital is offering then decide whichever one suits you best. I know is it a lot of trial and error just now but the rituximab does seem to help people that have failed on Enbrel or so I was told. Good luck. x

[Neonkitty59 in reply to mille]

Hi Mille, Thanks for your reply. I am just worried more wait means more damage in my fingers and knees, which is what keeps happening since last April.. Hopefully the steroid injections and what they will give at the infusion time will tide me over. I don't think Tocilizumab is being offered at this stage for me. I was offered a Tocili injection at home research programme but as it isn't starting just yet my rheumy wanted me to get on Rituxi. As I said, the Enbrel worked two days later but didn't last beyond five weeks. I am very pleased to hear Rituxi has made a big difference to you. I had a steroid injection to my wrist on Monday and asked a question which the Registrar was not too sure about and admitted it! I asked that if Enbrel was a chimeric med and was murine (mouse) and I had had a site reaction to it, then if Rituximab is also chimeric and murine ..does this mean I will have a reaction to that? She said she didn't think so but to check at my pre-assessment for Rituxi next week. I am hoping not, but as my Consultant was talking about my Enbrel reaction last week then in the next breath said .. I think it is time for Rituximab .. I think not! Hope no more allergies to mice! Neonkitty x

[mille in reply to Neonkitty59]

Hi Neonkitty, I also had a site reaction to Enbrel but I have been fine with rituximab. I do remember my hands burning the day after my first infusion but that only lasted a day. As you probably already know, it targets a different part of the immune system 'B' cells. In Scotland we can have Tocilizumab, that was going to be my next one if the rituximab didn't work. Take care and I hope it all works well for you. xx

[Neonkitty59 in reply to mille]

I am sorry to hear you had burning hands and glad it was just an initial thing, and yes, as it targets B cells and is a different way of approach, then no reason to think I will have an allergic problem. If Rituxi doesn't work then I was also told it is Tocilizumab next. I am in Yorkshire. xx

[Tillytop]

Hello,

I'm on Rituximab and it's now working really well for me. When I started it I was told by the rheumatologist it was not fast acting and that it could take up to 9 months before I knew if/how well it was going to work for me. At my hospital they routinely give a second set of infusions 6 months after the first - and only make a formal assessment of how well it's working 3 months after the second set (ie 9 months after starting the drug). As I'm sure you will have read, they routinely give steroid infusions alongside each Rituximab infusion and, for me, that gives noticeable joint relief almost immediately. From my perpective, like you, having had two other biologics before Rituximab, the big benefit of Ritux is that if it works, it is only given on an "as and when needed" basis, rather than every so many weeks or months. The minimum time between sets of infusions is 6 months but apparently some people can go for as long as 18 months between infusions. I have had 3 lots of infusions now and, for me, I think the optimum time between infusions is about a year. Due to other health stuff, I missed my "booster" dose after 6 months but I think, if I remember rightly, it probably started to help me noticeably within about 6 months.

If you do decide to go for Rituximab, I really do hope it helps you as much as it has helped me.

Tilly x

[Neonkitty59 in reply to Tillytop]

Hi Tilly, I think they will give me blood tests much sooner .. they always do whatever the recommendations, at my hospital. Every three months is their standard. You have said exactly what I feel is a very good aspect of having the Rituxi. That it can be more as and when rather than take every week or fortnight or month. If someone could go 18 months .. that is fantastic. Apart from those infusion sessions your time is freer as such too. However, MTX is still to be taken sub-cut weekly. Do you take that too? I will see what my biologics nurse says next Friday but that is what my rheumy proposed last week at my Humira review. I am still on Humira till she tells me to stop as it is doing a little something but nothing like as much as it should. I would think I have to have a couple of weeks in-between my last Humira and starting Rituxi. I am glad it started to work within the first six months. It is often confusing when you have a much needed steroid injection although with Humira I knew it had done some things that the steroid wasn't doing. That might not make sense but I got more strength in certain areas and my feet didn't come back swollen which used to happen after a steroid shot wore off. They are a bit like strange and fickle friends are the steroid injections. They are lovely to start with but then go off in a huff!! (Not that I have too many fickle friends!) Hope you continue with great success in Rituxi and thank you for your comments. Neonkitty x