I am interested in hearing the experiences of others who have had Rituximab infusions---there can't be that many of us, judging by the numbers at my hospital---to see if there's a common thread in side-effects that's not being picked up by the medics.

I've only had one treatment, back in April/May of 2010. Apart from the effects of the huge dose of steroids, this went relatively smoothly (I experienced some tingling and numbness in hands and arms, also a headache), and the Rituximab has worked well for me. However, I had a scary summer healthwise, which may or may not be connected.

What happened? Well, about 6 weeks later, standing indoors talking to my husband, I had a “funny turn”---felt strangely disorientated, though not dizzy exactly, with weakness down the left side of my body. Also tingling and numbness in my left hand, foot and leg. We ruled out a stroke, as I could lift both arms and had no problem with speech, understanding, moving face or body. The GP nevertheless referred me to the hospital’s TIA unit, where numerous tests were done but nothing found.

I experienced continuing “attacks” of numbness/tingling down my left side (and I’m not sure if they began before or after the funny turn) as well as occasional funny turns. They seemed to happen when I was stressed out, which was quite often—there were several things going on; firstly, my Mum, although physically fit, was becoming increasingly demanding and dependent on me since my father’s death, constantly phoning. Secondly, we were trying unsuccessfully to find somewhere nearby for her to live, as I was unable to support her at a distance. Thirdly, we were planning a new fitted kitchen for the first time. One day in addition I had a full blown migraine, which pointed towards stress being the cause of the symptoms.

The thing is, I’ve had to deal with stressful situations before (we had a new bathroom in 2007!!!) and coped fine, so I’m wondering if there’s something else going on…

Another scary incident happened that summer whilst simply sitting in an armchair, talking to a friend. Suddenly before my eyes the room seemed to jumble, my ears buzzed and filled up, then I blacked out momentarily. My friend said I went very red then returned to normal. I recovered quickly but felt very strange for some time.

Naturally, I reported all this to the RA nurse, but she dismissed the possibility of any link with the Rituximab. But supposing the same is happening all over…..?
The likelihood is that it’s all a coincidence and unconnected, but I would still be interested to learn if anyone else on Rituximab has experienced similar symptoms.

In case you’re wondering why it’s taken me so long to get round to doing this, last year was incredibly hectic (I’d have never coped prior to the Rituximab). We moved Mum nearby (had to do everything) then only child got married in the autumn.... so lots more stress, but none of those symptoms! With increasing RA symptoms and an impending DAS assessment, I now need to consider whether to have Rituximab again.

I've had one course of rituximab and have experienced nothing of this nature. The only side-effect I experienced was a severe drop in blood pressure while both infusions were happening. That said, the rituximab hasn't done anything for my RA either!

Make sure you get these symptoms investigated fully before ascribing them to the drug. Good luck.

Hi Liz - I had my first two treatments last month. I have not had the same problems as you and think that the treatment is beginning to show some improvements in joint pain.

However, I have had some dizzy spells and I definitely feel mentally slower than I did. Not sure if that is due to having an infection to get over and trying to get back to work too quickly. I'm hoping it is temporary though.

I would definitely get your symptoms checked properly before you have more RTX treatments though. xx Ailsa

Hi Liz

I had one full cycle of Rituximab in November 2011; no side effects but no noticeable improvement either! I have had a few UTIs which I could blame on the Ritux, but feel they're more likely due to an already compromised immune system and an increased dosage of methotrexate, a road once previously travelled!

As regards your symptoms, I did quite a bit of research on Rituximab before agreeing to go ahead (had severe RA 23+ years and taken most drugs along the way!). Apart from PML (Progressive Multifocal Leukoencephalopathy) mentioned by Jenni, a demyelinating disease of the central nervous system which is extremely rare, other side effects are well documented in the Rituximab patient information leaflets. These types of drugs are rigorously tested on many different levels before they are used in the treatment of patients. Sometimes in our desire to apportion blame it is all too easy to assume that our problems lay with our medication, whereas in reality the medication can mask underlying problems.

I understand that your symptoms were investigated in the TIA unit and nothing found. I wonder whether you were given a CT scan of the brain? I was advised that the only way to assess with certainty whether a TIA had taken place was through a scan which would show lesions in the brain. One of my teenage sons experienced similar problems to yours about 18 months ago and yet on one occasion he managed to walk the 7 miles home from school! Scans showed that a number of small TIAs had taken place. It seems these were brought on by stress. He is now on daily meds to control recurring headaches but is otherwise absolutely fine.

I would definitely be inclined to insist on further investigation until the actual cause is found. There are several types of migraine such as 'basilar' which can cause brain stem related symptoms. Migraine is a neurological condition and the symptoms you describe appear to have some basis in the nervous system. There again I'm no doctor ...

Hope you are able to get some clarification before your next infusion. All the best,

Lyn x