Hi everyone. This is my first post. I just want to ask if anyone has experienced symptons getting worse after 2 rituxan infusions. Ive had mine and my symptoms change and worsen everyday.
Its not been 12 weeks but is this usual or not.
Any replies greatly appreciated and thanks in advance.
Written by
Judyfish5
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Hi Judy...I'm not sure if its usual maybe worth checking with your Rheumatologist if you're able. Rituximab is quite slow to kick in it can take up to 16 weeks...I had my first round last year and it was slow at kicking in and was even offered a further steroid Jab whilst waiting...it did help eventually but wasn't the big improvement I'd hoped it to be. I'm going in this Friday for my next round so I'm hoping to have a better effect this time. The thing is as well we are not usually offered a further appointment until 3/4 months in so like I said maybe worth contacting your team. Good luck...bear with it and I hope you get some relief very soon. 😊
Hi Judy, I had my first 2 infusions of Rituximab in December and after waiting and waiting for some improvement I now seem to be getting worse. My fatigue is now worst than it's ever been and joints that were never previously affected are now getting swollen and painful! I saw my Rheumy last month and he said it's certainly not working as well as he had hoped for me ( my bloods were slightly better). He said ideally he would have wanted me to be having methotrexate with it, unfortunately I can't as MTX causes my LFT's to rocket. I am taking Sulfasalazine with it and he has advised I double my dose of that for the time being. I was previously injecting Cimzia and that as did MTX, worked fantastically but then caused me liver problems. He really didn't seem to know what to do next and said he will see how things go before he decides if I will have a second round of Rituximab and I should just contact him when I need to ( my knee will need to be aspirated again soon) before my next appointment in September! I am really worried because he has always been so positive and sure what his next plan would be for me in the past! In the meantime my life is going downhill fast, I have been on sick leave for 5 months and things are looking bleak!
I had my first and second infusion last month. Felt great afterwards both times but I was told that was the steroid infusion given first at each course. I've put it down to feeling good after the steroids and when after 10 days each time I came back to reality forgetting how much pain I had pre steroids. Too early to say if the Rituximab is working as it can take a while and sometimes more courses are needed. I'm not expecting a miracle but any relief would be a bonus. If you have a rheumatology helpline maybe ringing them ?
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