More chemotherapy

I met with my neurologist today; news was worse that what I was expecting. Multiple leg nerve deterioration and regression of nerve damage in one arm as well. Further autonomic nerve damage (i.e. thermo regulation, and ability to empty bladder fully) and dodgy ESR results all support the reasons why I've been achey and seen a return to sweat soaked restless nights. No it's not the weather either. PAN's back.

I am now waiting for a call from my rheumatologist. I am being put straight back on the pulse cycles of methyl prednisolone and cyclosphosphamide. There is also a further suggestion that I will then continue oral cyclophosphamide with either azathioprine or methotrexate after the cycles have bashed this thing in again.

Feeling frustrated and a bit disconsolate right now; may be a bit of shock...

9 Replies

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  • Sorry to hear that Martyn. It's a frustrating disease.

    I assume you've already had at least one round of Cyclophosphamide. Have they not considered Rituximab as an alternative ?

  • Yes Richard, I had 10 cycles of chemo from July 2012 to January 2013. I discussed Rituximab in length with my rheumatologist. Her opinion is that she would not be able to get funding to use Rituximab on an ANCA negative vasculitis type, and that it is only primarily used to treat the ANCA types. There is further evidence to support this that I have found in the way of a "medical business case" within a local authority guidelines, see panmerseyapc.nhs.uk/guideli...

    In the longer term I'm between the devil and the deep blue sea though; longer term bladder cancer risk vs PAN flare and renal failure. I think I'll take the oral cyclophosphamide route to support the azathioprine and prednisolone any day. We'll see what my rheumatologists cooks up next.

  • Hi Martyn,

    Sorry to hear that your PAN has bitten back. Some times it is like a sleeping giant, you make the wrong move and it rears up and gets you. I hope that your latest problems are not as a result of your walk.

    I hope that your Rheumy can come up with a suitable cocktail of drugs for you.

    Regards,

    Peter

  • Hi Martyn,

    Really sorry to hear about the set back. It's almost like a game of snakes and ladders. Just when you think you are on the up you come crashing back down. The fact that you managed to complete the full 31 miles of the WW is or the more remarkable with the PAN flare lurking in the background. On balance the cyclo is the lesser of two evils. Let's hope it gives the PAN a good kicking this time. We want you back to celebrate a re-run of the WW next year.

    Good luck

    Chris

  • I have plans for next June. 21st June to be precise. Negotiations started with Worcestershire Council for a possible inaugural charity walk along what the council want to be an alternative to the Worcestershire Way.

    But first to focus on getting fixed; need to fix my peroneal and tibial nerves otherwise I will be wheeling and not walking :).

  • I also thought RTX would be considered as an alternative but according to what Martyn has said it is not an option for people with None ANCA Vasculitis. I will talk to John about this in the morning.

    Susan

  • Thanks, hope you got some sleep too; that was a late night :)

  • I have just read the post you placed yesterday and wanted to support you and to say how sorry I am about all the health news you had to take in yesterday. I really hope the new treatments you are put on make things get easier again for you.

  • thank you, that's very kind

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