Rituximab infusion Feb. 9/26. Not feeling like it is working. Still have arthritis pain, in fact, it seems worse. How long until it works?

How Long Until Rituximab works? Or, is there a way to know that rituximab is not working for me?

[Lyndy]

It is a long lead but I usually feel the difference within 15 weeks. Was this your first one? I do remember saying at my 12 week check after my first lot ‘this isn’t working for me’ and about 2 weeks later I suddenly felt better . xx

[charisma]

Hi lucky2stillBalive

Guess you’re in the USA..

I started in Dec, 10th and 24th.

Began to feel benefits in the last few days at 14-15 weeks stage.

I also have started MTX Metoject Pens 7.5mg again, 4 weeks ago, to help anchor the biologic.

And I have had Prednisolone continuously meantime, since Sept though started in June 2019 with a taper.

Now down to 5mg, told to carry on another two weeks at that dose then start on 1mg to ease off later.

It has been a long struggle but let’s hope yours might start working sooner as it differs amongst individuals.

[Hidden in reply to charisma]

Appreciate your feedback.

Sometimes in medicine, hope is what we can learn on. You have given me HOPE!

Bless You.

[charisma in reply to Hidden]

Glad to hear it! Stay strong. X

[AgedCrone]

You have only been on it about 6 weeks haven’t you.....so give it a chance.

It often doesn’t kick in 100% until after the second duo of infusions....but when it does it’s amazing.......so don’t give up on it too soon.

I take it without Mtx or Methylpred & it’s the most successful drug I have had in 20+ years.

[Hidden in reply to AgedCrone]

Was hoping a 2nd infusion wouldn't be necessary. That cant come until June at the earliest or August.

I still take MTX.

You have offered hope, and I appreciate that.

Have a follow up with Rheum. In 2 weeks. We'll see what he says.

[Dragonfly4]

Hi,

Sorry to hear your struggling.

It's hard to explain if Rituximab/Rituxan/Truxima works for individuals... I can only offer my experience which comes with a caveat that I am being treated on this bio with Lupus as my primary. I have umpteen autoimmune diseases including RA+ which was diagnosed over 30 years ago. Am 55 now.

Having had every DMARD available in the UK over the years, I had come to the end of my tether and decided to stop all meds and let my diseases do me in. Thanks to this forum tho, I was told about biologics which I had NEVER been offered despite a 30 year history.

If I'm 100% honest, in my opinion I do believe that the bios have been more helpful in regards to joint pain and deformities with my RA than for my lupus. I've had 12 ops on feet, ankle surgery and 2 hand surgeries for joint deformities but since bios, the RA side of things has really got much better.

I'm on a 3year medical BILAG trial for Rituximab etc for Lupus and tho it has helped to some extent, I certainly think it is more helpful for RA and the whole point of biologics is that they are steroid sparing... the docs don't want patients to use steroids due to the catalogue and often catastrophic side effects and steroids to me are a nemesis.

Every time I've had bios, the other 3 people in the room where we have our infusions say that they are miracle meds and compared to DMARDS, which no longer work for me and I can't take any, I would say I have to agree with them.

However, it's different for all of us and trying to get the correct DMARD working with the bios is a bit of an experiment. The only way you'll know if they are going to work is "time"... that's a hard and bitter reality when you feel so ill and in pain... but in time, you may feel a big difference. I really do hope they work for you in time.

I'm having my next round starting on 23rd April... I'm shielding and am utterly terrified of going to the hospital tho they are assuring me all precautions are being taken... I'm 3 months overdue for them due to post-op infection and unfortunately having dysphonia which is caused by my RA affecting the joints in my larynx. So I know I need them as no energy, constant fatigue and lupus ill feeling, so my consultant says I need them or else I'm likely to need steroids again and I don't want to do that. I have bios every six months but many patients are known to have gone up to 18 and 36 months without having the need for them as they have made such a difference. I don't think I've heard anyone tell me that their quality of life has not improved since taking Rituximab.

Your bloods tests can indicate whether you have active inflammation but after a lifetime of illness I don't always hold onto the assurances of no active inflammation because my CRP etc can come back within semi normal range and I can feel like death warmed up.

Do tell your consultant how you feel (I would imagine it will be a telephone consultation) and ask if it's possible for the district nurse to go to you and take bloods to check on your levels and markers.

As others above have said, it really is a wait and see but I do believe it does improve symptoms after a few sets of infusions and I can honestly say that for my RA I have experienced good efficacy and even for my Lupus, well, they certainly work a whole lot better than any DMARD that I've ever been on.

(Steroids do the job for sure, but there are terrible side effects the longer you are on them, nasty nasty meds... tho they work 🙃)

Oh, just read back, not sure what country you're in. The US is more advanced re bios but also more prone to the use of steroids. (Lived in USA for 4 years)

Let us know how you go...

and whilst I have the opportunity, BE SAFE EVERYONE, STAY HOME, SAVE LIVES

PLEASE PLEASE PLEASE.

ps. I had given up, was too sick of being sick and had no hope... biologics have given me HOPE, my quality of life has improved greatly and that's what keeps me getting up each day.

[Neonkittie17]

Your immunoglobulin blood tests tell the rheumy/nurse if Rituximab is having the effect of depleting your B cells (sorry o can’t remember what readings they are supposed to be) and also if your CRP/ESR is low (usually under 5 for CRP and under 12 for ESR.). I felt Rtx working after about 6 weeks. Not just mobility but a better feeling of general well-being.

Rtx worked for me first round but I know of people who have had to have a second round before it has worked. Hope you can speak to your rheumy or nurse of you feel it isn’t working for you. Good luck. x

[Hidden]

What kinds of meds are bios?

I have compromised lungs due to a fungal infection in 2017, so docs try to work with lung and RA issues at the same time.