Mycophenolate

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

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

  • 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 john.mills@vasculitis.org.uk

  • 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.

    AndrewT

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