Infusion

[Mystik]

Has anyone tried Rituximab infusions has it helped any Problems ? What r the side effects like

M worried After I read the side-effects more prone to side-effects infections please can somebody help me or tell me if it’s worth it or not thank you have a blessed day

[Penguintaz]

Good morning Mystik,

I have only had two so far, my first two in fact

The first time I had it I was so sleepy and slept through most of the treatment, felt a bit flu like the next day but no other side affects, my arm was even not bruised from the canula!

At first I noticed no real difference but after the second infusion, which also made me sleepy, I felt a lot better. My energy levels have been greatly improved, I do still struggle a bit with leg pain but I feel this is more my job related and seems to be under control with steroids.

I think read up on the side effects, address any concerns with your Rheumy. If you go for it let the nurses know how you feeling, they can slow the treatment down or if you do have a bad reaction stop the treatment completely. Main thing to remember is the first two probably will take most of a day to do, main side effect is feeling a bit flu like on the day and the day after, it goes quickly though

[Melba1]

Sorry, just seen this!

I’ve had 4 rituximab infusions and think it works well for me. Side effects are known to be quite rare from this and lots of patients are reporting feeling better on it. Some people feel tired and a bit flu like in the few days afterwards and I get an increased heart rate (but that’s my bodies reaction to most drugs).

I’d say the positives for me were it worked quite quickly on pain (I actually didn’t realise I had such pain until it was gone - almost completely). I get brain problems from the lupus and I got my old pre- lupus brain back after rituximab. The only thing that didn’t improve within a few months was the fatigue which I was really disappointed about but 4/5 months after the drug it completely lifted. However, I’d also started methotrexate 8 weeks earlier so I was sure methotrexate was my fatigue ‘cure’ but my rheumy and immunologist both said they thought it was the delayed effects of the rituximab (and my rheumy is usually right).

In terms of infection risk, it is less risk than some of the others as they reduce more of the whole immune system. Rituximab’s aim is to get rid of our B cells which often are causing our problems but we’re still left with the T cells and complement system which do most of the infection fighting anyway.

I didn’t get any infections from rituximab but have had several being on methotrexate.

It’s always so worrying starting a new drug, balancing up the pros and cons. We all react so differently too. What does your rheumy say? If you have a good one they should go through how it might help and potential problems for you - as they should know you as an individual as well as the disease in general and your version of the disease.

Good luck x