Pain free for 4 years

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In Jan 2011 I suffered a Rheumatoid autoimmune reaction which resulted in Scleritis - I have never know pain like it.  I was treated at the Brighton Eye Hospital and even went for a consult with Carlos Pavesio at Moorfields.  I had been treated with high dose steroids, cyclophosphamide, anti immune drugs and enough pain killers to floor an elephant with no improvement.  In April the consultants decided that they had tried most drug theraphies so would try something more experimental - Retuximab - all the potential side effects were given to me (some of which were very scary) but I decided to go ahead as I could keep going as I was.  Two infusions and a month later I was free of pain and being taken off most of the other medication.  I had been warned that scleritis is likely to reoccur but 4 years on I am still pain free.

 

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  • Posted

    That's awesome, hope you are still pain free. I am struggling with pain right now, I have just been started on Azathioprine after Methotrexate failed but I will certainly speak to my rhumatologist about Retuximab when I next see him. Thanks for sharing.

    Dawn

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  • Posted

    What are the side effects of this drug? Iv been suffering for 6 weeks now and I'm on steroids and drops and neither of these is helping. ! And I'm not doing well with the side effects of steroids either!

    TBH it's actually scaring me! And it just came out of nowhere and I'm seeing no improvements 😢

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