Hi. I have Takayasu's Arteritis and over the... - Vasculitis UK

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Hi. I have Takayasu's Arteritis and over the last 18 months my disease activity has progressed despite a recent course of cyclophosphamide.

JElsom profile image
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There is now talk of me starting infliximab. I'm interested to hear what people's experiences are with this drug - good or bad! Thanks. Jane

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JElsom
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Hi Jane. I've no experience of TA or Infliximab per se but my WG/GWP didn't respond to cyclophosamide so was given Rituximab which proved to be my saviour. A Google search reveals quite a number of peer reviewed papers which report success in achieving remission in cases like yours and the fact your clinician(?) is suggesting this as alternative suggests they're on the ball. Do you mind revealing where you're being treated and who by? The search results can be found at bit.ly/U9hoRn

Hopefully there may be someone here who can share their experiences although I know the drug is regularly used for various other auto-immune conditions (e.g. Chrone's) without any particular side effects and without the toxicity of cyclophosamide.

Healthy wishes.

Martin

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Littledot3

Hi Jane, just wondering how you got on with the infliximab? I too have Takayasu's Arteritis and after 6 months of methotrexate and pred there is still disease activity so they are now going to add in infliximab. Just wondering what peopl's experiences are with this?

Thanks

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JElsom in reply to Littledot3

Hi. Sorry to hear that things are still active. In the end they didn't give me infliximab and decided to wait a bit longer with just pred and MTX. Unfortunately they now think things may be active again and they're going to put me on a new drug called tocilizumab. People seem to have pretty good experiences of these types of drugs from what I've heard. I hope they work out for you.