Rituximab wearing off too soon

[mhlmom]

I had my first two infusions in January and waited patiently for signs of improvement. Thanks to asking here, I knew it could take 3-4 months. Sure enough in early May I rapidly began to feel better and had a fantastic May with almost no pain, stiffness or fatigue. Life felt normal. Then 2 weeks ago it all started to slide again. 5 weeks of feeling great and now I’m back to spending hours awake in pain at night and being in pain all day. Today is 5 months since the last infusion and I feel really disheartened that the benefit didn’t last. I am seeing my rheumatologist on Friday to discuss what happens now but am wondering if it is worth trying a second round of infusions to see if it will last longer? Any thoughts?? (I’m in Scotland in an area with almost no Covid cases)

[Lolabridge]

I had a similar experience and needed my second cycle of Rituximab after six months. My consultant told me the second cycle would probably work even better than the first and it has a cumulative effect. He was right and I felt good for longer. My third cycle has been postponed from end of April because of Covid risk and, whilst I am having some symptoms again I am coping.

So don’t give up on Rituximab you may well find even more relief and for longer with your next cycle. I hope you can get it soon.

[mhlmom in reply to Lolabridge]

That is so good to hear! Thanks.

[Neonkittie17 in reply to Lolabridge]

I was told the same that if the first round of infusions didn’t work too great then the second round usually worked better. The first round did work very well for me but I would have persevered to a second round if I hadn’t done too great on the first. x

[GranAmie]

what did your rheumatologist say when starting you on RTX? 6 monthly? I gather from this site that's what many people get. I've been lucky so far ; first set in 2017 and have settled in well with it, to the extent that am managing for abt 11 months. Getting twitchy now at nearly 12 months but have had my echocardiogram and am on waiting list for 4th infusion session[s]. I was interested to learn that they are now trialling one session infusions, dropping the smaller 2nd one in some UK areas. Take care x

[mhlmom in reply to GranAmie]

They said the time between infusions could be anywhere from 6 months to 2 years depending on when the symptoms returned. I just wasn’t expecting it to start wearing off at Jess than 5 months...I would be happy with 11 month intervals!

[Lolabridge in reply to mhlmom]

Yes time interval varies between cycles and is usually 6-12 months. My R.A. is sero positive and was very aggressive plus I’m not on MTX with it so maybe that’s why I needed it earlier than some. I’m still taking 7mg Prednisolone daily too. But I’m really looking forward to getting my next infusion as Rituximab has been a life changer for me.

[mhlmom in reply to Lolabridge]

Im also sero-positive and with very aggressive RA so maybe it just needs more at the start to get it working - at least it did work for 5 weeks so there is hope I think for the second round!

[pino99]

I hardly noticed any benefit after my first infusion of Rituximab. Had a second about six months later and that had a very clear impact. My third was about nine months after the second and that was now one and a half years ago, I have been amazingly well and my CRP has been down to normal levels. Now possibly starting to wear off and a few aches and pains creeping in. Currently waiting for a phone call for my fourth infusion, but this one more to do with my lung disease.

Definitely try one or two more infusions before giving up if they are being offered.

Best wishes

[mhlmom in reply to pino99]

Thank you. That definitely supports my thoughts on it. The 5 weeks I had were brilliant so I feel I should give it a chance.

[Picasso8]

I have had 2 cycles And it’s be disastrous both tendons in thumbs have snapped so going for repair of one of them next Monday. The pain has never left me and my hands have been continuously swollen, I’m told it can take 6 months to work. Next cycle of infusion hv as been cancelled due to covid so will only be taking steroids for foreseeable. I wish I’d never agreed to try it in first place.

[mhlmom in reply to Picasso8]

Sorry to hear that and I hope they find something that works for you.

[Nik8210]

Hey hope ur ok I would certainly think about having another round of rutiximab. I am booked in for my 5th or 6th round in August it dosent last the full six months but for me I get a good 12 weeks where I feel completely normal then it’s a slog till the next one.

I seem to remember my consultant saying it takes more than one round to decide but it was a while ago so am not completely sure he did. We decided to keep going with regular treatment despite the current situation as without it I would probably be back on crutches fairly quickly. Am in Lanarkshire if it helps

[mhlmom in reply to Nik8210]

It does help to hear from someone in Scotland. And I could live with 3/6 months being good 😊

[Nik8210]

what I try to do is be as active as I can when am feeling well and try to do things that make me at least feel like I have achieved something positive. Stripped and re hung wallpaper in my hall after the last infusion it took me ages but felt a lot better for it. Where about are u

[mhlmom in reply to Nik8210]

I'm at the bottom end of Perthshire about 20 minutes north of Stirling. My family are from the Cumbernauld/Kilsyth area. I wallpapered after my infusion too! And created a new flower bed in the garden (with help). I agree that looking at what I have done makes me feel like I am making progress even if it's slow.

[AgedCrone]

Yes it is definitely worth trying another set of infusions .......when you see your rheumatologist on Friday he will see your Bloods & examine you ....and will tell your Rheumatology nurse to order your next infusions.

I too had my last infusion in January ....I’m due next month & I spoke to my rheumy nurse last week and she is going to order the Rtx.

When I first started Rtx infusions in 2016 the first couple didn’t last the full six months ......but now I have graduated to only having a single infusion every six months .....so don’t give up because it’s really such an easy drug to be on.... ......no remembering to take pills, no messing around with pens or syringes.If it’s going to work for you,I think that really is a great bonus.

[mhlmom in reply to AgedCrone]

That’s what I really liked about it when it was offered. The alternative was a daily tablet and it seemed a no brainier!

[AgedCrone]

Stick with it....things will get better!