Vasculitis UK
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Hi I was diagnosed with Wegeners in November 2010 after 4 years of illness and countless visits to my GP who had no idea what was wrong with me. Thankfully, whilst staying at my daughter's and seeing her doctor, I was finally admitted to hospital after he did the right blood tests and identified I was seriously ill. (My WG affects my nose and ears). To cut a long story short I ended up on Rituximab as the conventional treatment did not work. It was a wonder drug for me as I finally became well and was able to resume normal life. However, I have a new consultant who will no longer give me Rituximab and put me on Mycophenolate in October 2014. I have not felt well since taking it. Severe headaches, dizziness, bloating, depression. He insists I persevere but I am very unhappy after feeling so well on Rituximab. Does anyone else have the same problems, and is there anything that can be done?

Thank you

5 Replies

John takes Mycophenolate , it has suited him well. But it does not suit everyone. Where are you seen phayes14?

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Hi thanks for replying. I am in Sheffield.


John is seen at Chesterfield if you want to contact him at all, to discuss this more, his email is


It would be useful to know the criteria for Rituximab. Do you think you were given this as one off when you were in a critical condition (life-threatening)? Usually, then afterwards, you are placed on a maintenance drug like Aza, cellcept etc.


Dear phayers14,

I have never been on Rituximab but am aware that many have been. I was on Azathioprine, prednisolone, and others prior to my Kidney Transplant, in July 2013. I am now on Tacrolimus and Mycophenolate along along with my 'usual cocktail' (I sound like a bar-tender). My advice would be to 'stick with' the Mycophenolate, for a few weeks anyway, and then, if you still feel unwell, speak to your new consultant. If (s)he still won't put you on this drug-and, I'm sure that he will-ask to see another consultant. The good doctors/consultants do listen, to their patients, if your doesn't......Maybe time for a change? I confess that I know little about doctors/consultants, in Sheffield-to be honest I know very little about Sheffield full stop!

Sorry to not be much use here. I send you my best wishes anyway.



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