well another drug fail.

[J1707-]

Rituximab after 3 months is a failure. I have been so much worse the last 6 weeks unable to walk or use my hands peripheral neuropathy off the scale . Managed to see another rheumatologist at the clinic . 3 infections and bed bound these last 6 weeks. Given a steroid injection and will see me in 2 months or before if steroid doesn’t work,he said he would like me to go on Rinvoq. He will talk to the team and let me know next appointment. Good appointment but he was running behind 2 hours.

[Deeb1764]

So glad they agreed that this was not working you have been so bad. Another day another drug! 🥰

[springcross]

Sorry to hear that J but glad you got to see another rheumy. Hope the steroid injection works quickly for you and the Rinvoq, when it happens and hope you don't have to wait too long for it.

[Boxerlady]

Sorry to hear that it hasn't worked but good that you've been seen - and listened to - at least. It's hard when they run behind; happened to me at my last appointment but it was a good appointment so it was worth it. Let's hope that the steroid injection helps and they get you onto the next medication quickly 🤞

[Hisue]

I had a severe adverse reaction to my first 7 hr Rituxan infusion. It took me 6 mths in bed to stop vomiting & repopulate the depleted cells before I could start another RA drug. (Weak & in pain the whole time; gabapentin helped.)

Rinvoq saved my life. A kind pharmacist helped me get it. It costs $8-10,000/mth here for 30 tablets/mth (USA).

Best wishes; & do press on....

[AgedCrone]

You never know..Rtx could still kick in…your symptoms could well have been lingering around before your infusion .

As you say your rheumy obviously can’t give you any other medication until at least 6 months after your first infusion…so just just cross your fingers & hope Rtx does work.

A lot of people think their medication is causing them symptoms, and oral meds can just be stopped, but an infusion can’t, & all of a sudden it starts working & you feel better….so don’t write it off too soon,

I do hope you are one of the lucky ones and the rituximab starts to work – it took me 16 years to be prescribed rituximab and it has given me my life back. I would fight to the death if anyone tried to take me off it.

It takes only 2 days a YEAR these days, with no other treatment needed except maybe the odd painkiller.

So keep hoping it works.

[J1707- in reply to AgedCrone]

I did say that to him but he said because my peripheral neuropathy was so prolonged and severe that this was a reaction to the drug and my joints were never this bad that I am bed ridden plus my history of problems with drugs it’s not worth continuing.

[AgedCrone in reply to J1707-]

Well you have a few months…just look on the bright side!

Good Luck.,

[3LittleBirds2 in reply to AgedCrone]

I will second this, my last cycle took ages to kick about 4 months I think and I've been on it 7 years!! Mind you I did get Covid a month after having it as well,. Sadly I am being taken off it as they don't think it's working for me..I tried to fight it but no can do.

[AgedCrone in reply to 3LittleBirds2]

I too have been on it 7 years & my Jan 2022 infusion didn’t work…that was the first time it had failed & my rheumy said it “just did not work sometimes for no apparent reason”I still firmly believe it was because I’d had a Covid vaccination too close in Nov 2021.My rheumy agreed that could be the case. He is a reasonable chap and actually agreed with me. When I said nobody really knows the optimum time with Covid vaccinations do they?

I got Covid in December 2022, but mildly…no worse than a bad cold.

I then had one infusion in April 2023…& it worked…not perfectly as it had before. But I had an Influenza jab in October 23 with no side effects….but rheumy said to wait until after Christmas….ie 9 months before I have my next Rtx infusion.

I’m so sorry you are being taken off the infusions…I would be very unhappy if when I have my pre-infusion blood tests in January, they throw up a reason to change medication.I hope what you are offered suits you as well as Rtx has.

Tbh I don’t think even the most conscientious Rheumy can foretell with 100% accuracy how a lot of our rheumy drugs will react on different people.All though my 20+ years of RA I have just taken the drug I have been offered…& those that didn’t suit me I have stuck it out for as long as I reasonably could before saying no more.

[LinaM]

sorry to hear this J! I hope the steroids kick in soon xx

[Beechwood1]

So sorry to hear you've had such a rough time recently. Our NRAS Helpline ladies are available for advice, or even just a chat! 🙂 Tel: [phone] Monday-Friday from 9.30am-4.30pm. They would welcome a call if you feel they could help in any way.

[Monkeysmum]

Sorry to read this J1707, sounds like a very rough few months for you. I’ll be keeping everything crossed for Rinvoq - this emotional rollercoaster doesn’t get any easier does it? 😒

[Blackberrywine]

I feel for you. Unfortunately I have the same issue with drugs. It feels like a right kick in the teeth! Some if us just don't react well to drugs. On the plus side my arthritis doesn't seem to have got any worse. I have pain, and get wiped out easily, but no further deterioration (yet!). I just have IM steroid from time to time. I Hooe you find something that suits.

[Marionfromhappydays]

I'm so sorry to read this.Hard not to feel a bit abandoned isn't it, hope the steroid injection works x

[emmajj1971]

Such a shame. It took me 3 rounds 18 months of rituximab before I had any joy with this but it's like a wonder drug for me