Anyone on Truxima infusions ?

[s2202]

Hi All please can you help. I've been given a Truxima infusion for Rheumatoid Arthritis 10 days ago but I'm still feeling really poorly particularly at night. I read it takes 5/6 weeks to be effective but just feel it's not going to be in my case as I usually respond to all medications very quickly. I have read that some people have responded to this drug within a day or two. The first day after the infusion, I felt absolutely great but since then it's not been good at all. I'm taking daily Leflunomide and Ibuprofen to relieve some of the pain and keep me going . I was on Benepali injections but that became less effective over the couple of years that I was on it.

Would be good to hear of other people's experiences of this drug. Thanks all. Much appreciated.☺️ x

[Lolabridge]

Yes Truxima (Rituximab) does take a few weeks to take effect, so hang on in there. It’s the methylprednisolone you had immediately before it that made you feel better straight after the infusion but that wears off. I have never heard of anyone saying Truxima takes effect within a day or two of the infusion so don’t believe all you read!!

It has been the wonder drug for me, enabling me to live mostly without pain. I hope it works just as well for you. Let us know when you start to notice the difference.

[s2202 in reply to Lolabridge]

Thanks so much for taking the time to respond. You have renewed my hope that it will work! Will definitely let you know when I start to feel better. Thanks again . It is much appreciated. xx

[AgedCrone]

Truxima is a Biosimilar to Rituximab….so if it replicates Rtx ….10 days is nowhere near long enough to judge its efficacy.Rtx can take until the second set of infusions …ie over 6 months before you feel the full benefit.

Speak to your rheumy nurse and ask her to explain the time scale…it would be a shame to miss out on such a good drug, just because you don’t try it for long enough.

[s2202 in reply to AgedCrone]

Thanks so much for responding. I do hope I won't have to wait six m onths. It's horrible feeling unwell and unable to get on with life as I have in the past. The longer I stay in bed at night the worse my rheumo becomes - I think I seize up. Take care and thanks once again for taking the trouble to respond.

[AgedCrone in reply to s2202]

You are right spending too long in one position is not good…you have to get moving….the more you gently stretch out your muscles the better.It is tempting to curl up in the warm….but as you say you seize up…so up you get,,keep warm & you’ll feel better

[s2202 in reply to AgedCrone]

Hi you certainly don't sound like an AgedCrone! Thanks for the help.

[AgedCrone in reply to AgedCrone]

Well maybe not a crone…but definitely aged & feeling every minute of my years unpacking all my removal boxes…..

[s2202 in reply to AgedCrone]

Well hope you'll be happy in your new home. x

[AgedCrone in reply to s2202]

Thank you…it’s bliss not having to climb stairs to bed…. But it takes me forever to get to bed because I can’t find anything!I unpack something & put it somewhere I think I will remember…..wrong!!!

[Rafandready70]

I’m the same as you in that both methotrexate (plus subsequent added in hydroxychloroquine and sulfasalazine) and then Benepali both worked immediately but rituximab took about 16 weeks before I noticed the difference. Hang in there!

[s2202 in reply to Rafandready70]

Thanks for your reply and yes I think I have to learn to be patient and put up the pain in the meantime. Ibuprofen is my greatest friend at times like this but I hate having to take it to be able to cope day to day. Take care and thanks again.

[Lotphie]

Hi s2202Yes I’m pretty much same as you and have my second dose of Truxima tomorrow. But how I’ll be up and dressed and at the hospital for 9.00 I don’t know 😂. Ebrel then Benapali were my wonder drug and yes worked immediately. So I too thought Truxima would be immediate (no one at the hospital said it would take a while for it to work. I’ve been off Benapali and methotrexate for some time now with flare ups in practically every joint and in a lot of pain. I’m very reliant on my husband to help me.

But reading the comments on here especially comments from Lolabridge has explained things more clearly.

Hope you feel better soon xx

[s2202 in reply to Lotphie]

Hi sorry to hear you're not well either. How you describe your health is just like mine and I dread going to sleep at night as I know it will get worse. Hope you are feeling better very soon. I have been advised by the hospital that I will not being given a two weekly follow up second dose of Truxima so just hope this one works! Thanks so much for taking the time to respond. Take care.

[Jimminey]

I had my first and second infusions of Truxima on 10th and 24th May this year. I also take Sulfasalazine and Mtx. My inflammation started to decline about 3 weeks ago. It came back and then went down again after my weekly dose of Mtx twice. I still have some inflammation, pain and fatigue, but something does seem to be happening to the inflammation at last after about 3 months. My rheumy said 2 weeks ago that Rituximab can take 3 months or longer to take effect.

I hope this is helpful to you. I am still wondering about the effects of Truxima myself and will just see how things go until my next rheumy telephone appointment in November. I hope yours kicks in - but do give it time.

(There was a similar post from ma73jon 4 days ago with replies, such as those above, that I certainly found interesting and useful)

[s2202 in reply to Jimminey]

Hi thank you so much for your reply. Everyone's replies have all been invaluable to me and give me hope that one day it will eventually work. I am not being given the second dose of Truxima two weeks so hope the first infusion does the trick. It is really good to hear that it has, in the main, worked for you. Can't wait to feel completely well again and feel more reassured that Truxima should eventually work. Thanks again and hope you stay healthy.

[Jimminey in reply to s2202]

I'm really glad that the replies have given you hope. There are some lovely, helpful people on this site and I have found it invaluable too. All the best.

[charisma]

I have had Truxima (brand of Rituximab) since Dec 2019, every six months from last of the two infusions.

Some Rheumatology Departments are now recommending just one infusion instead (I got two, given two weeks apart each time).

I also had Prednisolone to tide me over the 18 months it took to achieve full drug induced remission.

First round of infusions took approx 15 weeks to make any difference. That relief was limited and lasted only a month.

Second round took just a few days to induce a big change. That lasted very well but had not subdued active RA. I still felt amazing compared to the previous four years!

So it is definitely far too soon to expect any obvious change to pain levels. So sorry this is the case but the other drugs might tide you over. If not, do make sure you are given appropriate effective relief instead of enduring fir months on end. 💐🎖

[s2202 in reply to charisma]

Thanks for your response. It is much appreciated. Will try and take it one step at a time. Will ring my Rheumatology Dept for their advice on what I can do in the meantime. I have Osteoporosis so need to be careful just how often I have steroid injections. Thanks again.

Everyone has been so communicative and it helps me to know others have been in the same situation and dealt with it.

Take care.