Truxima (Rituximab) Desperate for some hope and other... - NRAS

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Truxima (Rituximab) Desperate for some hope and others experiences

SARAHG profile image
22 Replies

Hi I've not posted on here since the early years of RA. I am now at a point of desperation because I feel I'm never going to get better. RA has taken over my life and I'm not coping. I've tried several treatments over the last 3 years and none of them have worked. I had my first infusion of Truxima on 2nd Jan and my symptoms have worsened. I'm scared by how bad my RA has become and I don't know how much longer I can hold on to my job. Feel like I'm starting to give up. I've always fought so hard to rise above the pain and lead a normal life but it's too hard now. Please can anyone offer any advice or experience of this treatment?

22 Replies
oldtimer profile image
oldtimer

Have a look at the treatment pages on the NRAS website and you will see that they are a large number of medications available - so don't give up on yourself yet! Unfortunately, currently it's trial and error, not knowing which will work for which person and it can seem to take for ever. And you feel that you, personally, are not going to win. Then you suddenly find something that works for you and it's wonderful.

So keep your optimism going that the right treatment is out there somewhere and have a moan here when you need to - we know how it feels!

And if you put 'Rituximab' into the search box, you should reach lots of previous posts.

SARAHG profile image
SARAHG in reply to oldtimer

Thanks for your reply. In 2011 I was on Enbrel and it worked for a few years then stopped! Since then over the years it's got worse and worse. Steroids don't work anymore. I've failed on 4 other biologics now so it's not been under control for a long time. In the last few months I've been having a continuous flare and it's worn me down. The pain is more intense and debilitating. Just want my life back.

AgedCrone profile image
AgedCrone in reply to SARAHG

Had you the same rheumy all this time? I hesitate to suggest it, but could you have a word your GP about seeing a new Rhumatologist ?

You don't sound as if you have much faith in your present doctor,& I'm sure having a doctor you respect& think can help you is vital to moving things along in the right direction.

Re your Rtx infusion ...it's very doubtful only 8 days would make you feel worse, if you can try to be a bit optimistic about it working......it just might start to help....we have to help these drugs along sometimes.

I've been on RTX since 2016....my last in infusion in December did make me feel a bit off, but I'm coming around now, & I'm sure this time next week I will be fine....nothing works great all the time.

SARAHG profile image
SARAHG in reply to AgedCrone

Apologies for my dramatic post yesterday. I was in tears most of the day as the last few weeks have been awful and pain has been constant and intense. My lovely rheumatologist retired 3 years ago and I've seen so many different registrars since then. I have new one now that put me forward for this treatment no questions asked so I think he's on the ball. It's been a really tough few years. I wish I had posted something sooner. I find it so isolating because people don't understand what RA is and how serious it can be. They think it's just a bit of arthritis and I'm so young to have it. I can explain till I'm blue in the face......it should be called something else. Thanks for your support. X

AgedCrone profile image
AgedCrone in reply to SARAHG

Oh you DON't need to apologise....It is really difficult for those of you who are still working to have to try to balance how bad you are you feeling with loyalty to your job. But maybe it is time now to think of yourself .....get yourself right and then the job will fall into place? I don't know what you do so I don't know what options might be open to you.

I think a lot of us still try to sort everything on our own....I know I do. We think we are making a fuss & being wimpish if we call for an emergency appointment.

But.....If we don't tell our doctors how we feel how can they help us? I don't mean going in to to your rheumy's office weeping and wailing 'poor me poor' me but we have got to learn to boldly say "it doesn't seem as if X is working for me can you PLEASE think of something else that might help.'

It will get it off your chest and the doctor knows he needs to look for something else. You have been putting up with this for so long I'm sure your new doctor will pull out all the stops for you ...but can you investigate some sort of reduced work load, or even a planned leave of absence for a short period until things are looking up, & you won't have to struggle so?

One thing you can do about explaining the seriousness of RA to people is to pick up a few of the NRaS booklets in the Rheumy section of your hospital. I was really surprised at how informative they are and I have handed them around to a few people who even knowing I have had RA for 20+ years still used to patronisingly tell me they thought I "would be a lot better if I didn't put all those poisonous drugs into my system".

If only...... I won't tell you what I used to reply it's not for tender ears!

NeonkittyUK profile image
NeonkittyUK

Hang on Sarah and have faith! Rituximab has worked wonders for me when many others have failed, including two anti TNFs. It's not a fast worker, so I presume Truxima isn't either. Took eight weeks for me to see a marked improvement. Presume you've asked re a possible steroid shot to help you get to work, if any joints are stiff and swollen? Although the rheumys don't like to give you them just after a new med in case they mask/confuse the ESR and CRP, they can still see if Truxima is doing what it should by the fact your B cells will be depleting if it's working! I had a knee injection after my first duo of Rituximabs and as that wore off after four months I had already found I felt so so much better in a different way about eight weeks after my infusions. You feel as though you are moving towards something decent again. Not locked in doubled-up excruciating pain. A nice feeling, and hope you start to feel the benefits of Truxima soon. Keep a note of how you feel and when as that's always important with a new med. Presume they gave you a journal to record your comments? If not make one! Good luck. Rituximab has meant that I can go fell walking again and do quite a bit of exercise. Has allowed me to do weights and build muscle. Just to move pain free was my goal. It makes the world of difference. Keep us posted how you feel. You will soon be in control of your RA instead of it controlling you. x

SARAHG profile image
SARAHG in reply to NeonkittyUK

Thank you it's so good to hear others experiences. I felt very alone yesterday but all the posts show me I'm not. I've been at breaking point last couple of months. X

NeonkittyUK profile image
NeonkittyUK in reply to SARAHG

We are proof it works and has got us moving and with little pain or none at all any more for some. We are here if you need to chat if it feels like that breakthrough will never come! It will ❤️🌞

Doughnut61 profile image
Doughnut61

Feel for you, gentle hugs 💕 you will get there it’s just time I’m afraid x We are all here for you x

SARAHG profile image
SARAHG in reply to Doughnut61

Thank you X

sunnyweek profile image
sunnyweek

Hello Sarahg

So sorry to read about your long time flare and different drugs.

My experience of retuximab is that it takes up to eight weeks to kick in fully. I had an infusion on 9 and 23 November and now feel much better. For 8 weeks before the infusion I too was severely flared housebound really and had to increase prednisolone and naproxen and painkillers.

If steroids haven't worked for you did the doc give you a sufficient dose?

I'm sure you will slowly realise you are feeling better.

It's difficult when you work. And hope you can feel better about that too as the flare subsides. I do understand and wish you well and send a hug.x

SARAHG profile image
SARAHG in reply to sunnyweek

Thanks for sharing your experience. I hope it works soon. X

Tessthomy profile image
Tessthomy

Hi I too am about to embark on 2nd round of 2nd set of Rituximab which Is due on Friday next. 1st time round it didn’t work to the full extent so I’m hoping it will be better this time. As someone said above do try and keep as positive you can with this painful disease. Not easy I know but possible! I keep a stash of prenisolone, naproxen which I take when I need it most in between times and hopefully the good old Rituximab will work it’s magic in a few weeks. TT x

SARAHG profile image
SARAHG in reply to Tessthomy

I hope it works for you too. I will stay positive and Hope this one works x

Montys-Mom profile image
Montys-Mom

You symptoms sound very similar to mine. I was on Embrol for three years and it worked very well. Unfortunately in Jan 2018 I developed Breast Cancer and had to stop all medication for five months. RA practically crippled me and the pain was unbearable. They put me back on Embrol which no longer worked so in July I had my first Rituximab infusion. For the first two months I felt worse, but my symptoms have improved during the last two months and I have my second infusion next week. So please bear with it but I wouldn't expect a quick fix. I am a lot more mobile and certainly in less pain, but I am not as well as I was before the Cancer. I am hopeful that the second infusion will take me to the next step as everyone says it works better over time.

SARAHG profile image
SARAHG in reply to Montys-Mom

Thank you I just need to keep going and Hope that this will work x

GranAmie profile image
GranAmie

had my firstbio infusion late july last year and the 2nd in august after MTX wrecked me and then SSZ ditto. Felt awful for abt 10 days after the 1st infusion, but ok after the 2nd one. From then on slowly felt better and better and here I am and it's january 2019..... it takes time so hang in there, hon. they insisted i continue with sulfasalizine as well [that had bad bad side effects 4me] so am taking 50% dose just to keep them quiet. best of luck xox

Hobbledehoy profile image
Hobbledehoy

My heart bleeds for you, SARAHG. I'm SO glad you've got a new R consultant who seems determined to get to grips with it. There are so many meds which can work, and you have stoically tried so many. Firmly expose the extent of your need to him. NRAS excellent info. shows drugs seem to fall into categories DMARDS, biologics and now the new jak-inhibitors. I hope you get the VERY BEST treatment now. Keep in touch. Xx🍀

SARAHG profile image
SARAHG in reply to Hobbledehoy

I do feel they are doing their best to help me but as others have said it takes time. I research absolutely everything myself so whenever I go in I am armed with information. I have my 2nd infusion on Wednesday so I will speak to them about how I'm feeling then. I don't know that more steroids are an option as I've had so many in the last year and I have a large dose with infusion. I've had RA for 10 years now but this is worst it's been. It's not been properly under control for the last 3 years. I guess I am worried now about how much I've deteriorated in that time and what damage has it done.

movinalong11 profile image
movinalong11

I am so sorry, SARAHG! Sometimes it seems that way w me too, as I have RA, Fibromyalgia, Sjogrens, osteopenia and Osteoporosis. Lots of pain in my right hand and lower back right now, and cant bend my middle finger. Also found a painful nodule on my right foot. I am taking Enbrel shot right now, after trying several other neds.

movinalong11 profile image
movinalong11

Wishing you lots of luck in finding something that helps. You'll be in my thoughts!

Mrshorse profile image
Mrshorse

Hi SARAHG, I've just had my first 2 infusions over the last 3 weeks. How are you feeling now?

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