2nd round rituximab

[Stynk]

Hi anyone here on the second round of rituximab? My rheumatologist wanted to wait 8m between infusion and I am back to where I was before the first round. I won't want to wait as long again. The question I have is how long did it take the second time to work? It worked well for me 8-10 weeks first time. I just want to have my expectations in line will I be waiting that long again in your experience?

Thank you!!

[3LittleBirds2]

Hi Stynk...great name!! I've only had one round of rituximab so far..will be seeing if I can have another in October. Just wanted to ask did it take 8-10 weeks to start working or wore off after that time? Did you find a big improvement? Sorry for all the questions and thanks!!

[Stynk in reply to 3LittleBirds2]

Hi. It was slow steady improvement over. 8-10 weeks then lasted until August (had infusion in Feb.

[dobsey]

Hi stynx

I had mine within two weeks but it apparently doesn't matter if it's a few months as the second infusion is just a sweep up of what the first one missed

It is great stuff. I have never felt so good but i do also take hydrox and sulfz daily

I also have acupuncture which is great. Helps tremendously with the pain

Hope that helps

David

[Nadsrziguix in reply to dobsey]

Hi there do you have accupuncture straight after like a day after you've had your chemo or when?

Thanks

All the best

[cathie]

I had the second infusion of the second cycle (sounds rather biblical doesnt it...) on 1st September. I think its working better than the first cycle, but I have a lot of osteo pain in my knees which isnt helping! But I've been going very light on the painkillers so I think its working quite well.

My second cycle was six months after the first. It was faltering towards the end so they gave me a steroid shot which helped for three weeks.

Its very helpful to compare experiences so thanks for asking this.

Cathie

[Jora in reply to cathie]

Cathie, I find that when the RA is flaring, the inflammation in the knees, although very painful, actually cushions the joints so that the bone-on-bone OA pain is reduced. The minute the RA inflammation subsides, I can feel ( and hear!) the scraping OA. Is that your experience?

I'm getting very near my first Rituximab cycle. The NICE approval has come through. I just have to have a final chest X-ray this afternoon. I can't wait! I'm on maximum painkillers, MTX and 10 mg Prednisilone. Really can't move without it. So I pray this drug works well for me.

Jo x

[cathie in reply to Jora]

I think you're right about the correlation between inflammation and bone on bone pain. I hadnt worked that one out but now you say, I've had strapping on my knee for the last couple of weeks from my physio to help.

I really hope that you get the rituximab and that it works. If its administered as here in Edinburgh, you get three things, the anti-histamine, then steroid, then the real mccoy. Now i've always suspected that feeling better immediately was to do with the steroid (pred) because it didnt last. But this time I've had days when I havent really needed a painkiller except for the knees and I tend to rely on distraction for that, so it cant be too bad except for when I'm getting up from seated and sitting down. Or moving around in bed. But I've felt a vigour and purposefulness (and argumentativeness) which I havent had for a while.

Let us all know how things go (if you want). And be patient, it might be gradual.

XXX

[Marm]

I'm having my second cycle on 7th October and 21st October. Had first last November/December last year which was great. Felt an improvement after two weeks, hope this is the same. Can't take any other meds because of a lung problem. Good luck with yours

[d-creasey]

I'm having my first ever infusion on 23rd October pleased to read good things about it. X

[jenna]

I have had five cycles first one was in July 2012, Each lasting approx 8 - 9 months, I have not looked back since, before, I was a mess could not do anything, now I do everything (within reason). The best thing to ever happen to me , obviously everybody is different, But I am so grateful to be living in an era when this sort of medication is available to most people, Years ago in the 60s my aunt suffered terribly with this disease, My prays are that it works for everyone,

[Stynk in reply to jenna]

Can I ask if the subsequent cycles worked quicker than the first for you? I loved how it worked and now am back to where I was before which is exceedingly frustrating.

[allanah]

I've just had the first infusion of my second cycle but needed knee and hip injections in between. I will let you know how it goes ! X

[jenna]

If you are in a flare they do take longer to kick in, I do think we have to be aware that if the pain has subsided, and starts to return, our bodies seem to think it's worse. Sometimes it can take a month for me to get complete relief,,,, but speak to your rumi nurse if any problems thats what I would do.

[Stynk]

Thank you all for your comments and support! It is so nice to reach people who have been through it all before.