Allergic Reaction to Rituximab!What's the Alternatives?

[Wangpaupau]

Hello everyone, my daughter had her 1st infusion of her 2nd cycle of Rituximab in April 2021. The 2nd dose 2 weeks later was stopped immediately following a severe reaction ie breathing difficulties, rapid heart rate & body itching. She had 2 infusions of the Rituximab in May /June 2020 when she was newly diagnosed with MCTD & PH and was perfectly fine. She is now on Mycophenolate Mofetil 1g twice a day, 8mgs Prednisolone which she is titrating down slowly. Rheumy is waiting for approval for Ocrevus infusion for her. PH Dr mentioned Cyclophosphamide. Rheumy keen for her to start on another biologic as will be better for her PH but haven't come up with any offerings. Wondering if any one had experience of been given another biologic or other treatment following reaction to Rituximab? At the moment she has good & bad days and latest is she seems to be losing lots of hair! This happened last year and it stopped after a while. Is hair loss another sign of uncontrolled RA? I am sorry for this long post. Many thanks to you all lovely people who have replied to my previous posts before over one thing or another. I do worry about my 39yr old daughter.

[Neonkittie17]

Hi, without knowing what other biologics your daughter has had it would be difficult to say. She’s certainly had some reaction though. 😢 Wondering if anyone can advise here who’ve had similar infusion and post Rtx reactions as I have never had those. Presume she was given the pre IV steroid and antihistamine to try preempt allergic reaction? There are other biological RA meds similar level which people can have if Rtx has failed or given side effects etc., so don’t think there’s nothing else. I see one med has already here mentioned to her. Hope your daughter can talk with her rheumy. Good you are helping her. Best of luck. 💗

[Wangpaupau in reply to Neonkittie17]

Thank you Neonkittie17 for your reply. Much appreciated.

[Fra22-57]

I am on my 4th biologic and the only one that has started to work.It is Abatacept.There are lots to choose from.Choose I would say is the wrong word as the rheumatologist is the professional all knowledgeable but it seems to be left to the patient.I was given several leaflets to look through

[Pasjc in reply to Fra22-57]

This drug had worked very well for me too its Orencia xxx

[Fra22-57 in reply to Pasjc]

Yes it is the same drug

[Typsey]

I had Rituximab infusions. The 2 nd dose I had in November and come January I had the most awful flare. Couldn’t move anything and the pain was horrendous. Was laid up in bed about a week and when I got to see rheumy he sid possible fibromyalgia. I had not been that bad prior to infusions so I didn’t have that anymore and was given toxcilumab ( sorry not sure if that’s spelt correct) . I have been much better since then. So hopefully your daughter will get a biological that suits her and she can then hopefully have some form of normality . Wishing you the best of luck Hun

[Wangpaupau in reply to Typsey]

Thank you Typsey for your reply. Pleased that you are feeling better with the alternative infusion.

[Hisue in reply to Typsey]

Did you have to wait for several months before starting the new biologic? My rheumatologist would notvstart me on a néw biologic until the Rituxan was out of my system (in 6 mths) & I was in agony & am still suffering.

[Typsey]

I had to wait until June so was about 7 months wait. Yes was in agony hun . Got steroids to help me until I started , then I had to wean myself off them which I did . Hopefully they’ll get you started ASAP .

[Pasjc]

Hi Wangpaupau so sorry to hear about your daughter. Not sure if my story is of any help. I had been on a couple of dmsrds and reacted badly to both subsequently I was put on a biological drug I had also been on prednisolone for about 8 years id found it impossible to to reduce. Then I was put on a biological drug (Orencia) im now down to 2mg and feel very well. Its a long rd and I hope your daughter has the success that ive had. Xxxxx

[Wangpaupau in reply to Pasjc]

Hi Pasjc, thank you for replying to my post. It's so helpful to hear other people's experiences with treatments etc. I think when she has her next appointment in 2 weeks time, will mention these biologic and see what consultant says.

[PositivelyLupus]

Hi, so sorry to hear about your daughter. I'm not sure what conditions and has but for me I have lupus SLE and nephritis.

I had an anaphylaxis reaction to rituximab and switched to mycophenolate also. I found it didn't do much for my condition and have been switched to Tacrolimus which is working very well. My consultant was very against trying another biological infusion on me due to the reaction I had.

I'm on a combination of Tacrolimus, steroids, azathioprine and hydroxy chloroquine. I hope that helps xx