Has anyone experienced any side effects from having Rituximab?

[John_Mills]

[Essex-jill]

I have been having Rituximab for the last 5 years and I usually experience headaches and feel flu like, with aching joints and increased tiredness. It usually lasts about 5 days.

[John_Mills Volunteer]

That is interesting....one or two people have mentioned this, that is why we asked the question. But we were also told, the benefits of Rituximab far out way these kind side effects.

We only know of two people who reacted quite badly to Rituximab and had to stop taking it.

[Kenneth]

I have been having Rituximab fot the last 2 years & I am due my last one in December.

I must admit that I have not had any reactions whatsoever. I found the drug a great benifit to me until the trauma I suffered in July. Hopefully,when I have my last one it will be a benifit again.

[Hidden]

In the vast majority of cases Rituximab has been shown to be free from side effects but there have been cases of people suffering breathing difficulties and other 'reactive' issues.

However, from conversations with a number of clinicians using the drug (all of who feel it should become the gold standard, first choice over cyclophosamide), the question of reactions is whether they were caused by the drug itself but by the way it was administered. Logically, if it is infused too quickly there is a greater risk of side effects so it's worth patients monitoring the rate and timing of administration as staff can and do make mistakes.

Having had about 12 doses of the drug over the last 4 years (regime changes etc.) the only time I had an issue was when my immunoglobulins (particularly my IgG's) feel below the normal range and David Jayne suggested I wait until they recovered before having the next dose.

For me, Rituximab was a life saver, especially as cyclophos. and other toxic drugs had no impact on the progression of the disease and as such, I feel the very slight risks are far outweighed by the benefits of zero toxicity etc.

For the record, the current regime recommended by Addenbrooke's is to have 5 doses over 2 years (i.e. one every 6 months), irrespective of B cell count, unlike the old 'try it and wait and see attitude. In my case, David has advised I should have a annually as a maintenance regime but I appreciate I'm fortunate in that I don't have to battle with my PCT to get the drug.

Hope this helps anyone who is concerned about the perceived risks.

[Theresak]

I have had three courses of Rituxamab over the last 18months. Each time have felt quite sick on the day, but antisickness drugs have helped. The few days after i have felt as if i have had flu, so a few days of recovoury is always needed. But this is all worth it as the treatment has worked so much better this last time. I feel better at the moment than I have for ages. Long may it last.

[lisa-ranyell Vasculitis UK Volunteer]

I have had 5 courses of Rituximab over last 3 years and due another soon. been told i will be on this regime indefinitely. I feel fine on the day but feel flu-like with no energy for 2 or 3 days after but this is small price to pay for the benefits received

[PoppyS]

Have just finished my first 2 doses, 2 weekly, felt very tired and achy with a terrible headache after the first infusion and the headache would not go away. The second infusion was also followed by the same symptoms these are still continuing although don't always have the headache every day now do get it every few days but also get the "jelly" legs and arms every day which worsen as the day goes on. Appear to have lost all control and muscle tone in my legs and arms. Feel and look very puffed up with a moon face no doubt due to the steroids and generally get quite breathless but this could be a combination of the weight gain due to steriods and the disease as affects kidneys, sinus and median nerves in left arm.