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Thread: Freaky's back from Addenbrooke's and...

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    Default Freaky's back from Addenbrooke's and...

    I am coming off Methotrexate, which i've been on for nearly a year now as the top bloke Dr Jayne says i'm still smouldering and need a better drug. His choice is Rituximab over Cyclo for obvious reasons and hopes to give me 2 (i think) infusions as soon as the funding comes through and hopefully off the steroids within 6 months.

    He told me surgery wasn't even an option for me at the moment for my saddle nose and to put me off for at least 9 months if not 18. But did tell me a stern NO to fillers as they are just plastic and from a wegs point of view its a really bad idea. Bit deflated by that but i know they are only doing whats best.

    Back again in 2 months and hopefully start the Rituximab as soon as funding is done. Whoop Whoop!

    Oh and vdub, if you're reading this i took a few photos of Duxford as we drove past this morning, i'll put them on my profile page laters. x
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Good News Sam, glad things are been sorted out for you .I had the plastic fillers put in twice before dxt no bother having in but did nothing for my nose . As soon as they came out everthing started again !! DEEx

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    Thanks Dee, shame the fillers didnt work for you.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Oh and vdub, if you're reading this
    Of course, I'm reading this! And, thanks for thinking of me. Duxford is definitely on my bucket list and now, with you there, I have an additional reason to see it.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Quote Originally Posted by vdub View Post
    Of course, I'm reading this! And, thanks for thinking of me. Duxford is definitely on my bucket list and now, with you there, I have an additional reason to see it.
    Oh you flatterer!!
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Yeah Sam

    When I was an 'athlete' (in my own mind) in my past life (a year and some ago) I'd take a long run or a long bike ride or a long cross country ski in a similar fashion to what you've been dealt with at the docs. Small incremental goals. You have a couple of great ones before the nose issue and once you get them it will definitely be time for celebration. So you have great news. Three big reasons to celebrate before you get to celebrate the nose job. For any person that is great, but for a WegHead it's even better. I'm happy for you! Very happy for you!

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    Thanks Marta...for me its too easy to dwell on the bad stuff but you've just shown me i should be really happy as the end of Pred is looming in the distance.

    And hopefully weight loss will follow, i've never been thin but hopefully thinner will happen for me.
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    I'm very relieved to hear all this, Sam. It can be really tricky to tell when Wegs is smoldering, even for the Wegs specialists. Kudos to Dr Jayne for changing your treatment and giving you great advice.

    And "Hot diggety" about getting off pred in 6 months. We'll have to celebrate that!

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    Quote Originally Posted by Sangye View Post
    And "Hot diggety" about getting off pred in 6 months. We'll have to celebrate that!
    Yes indeed, drinks and nibbles on me!

    Feel so privileged to have met Dr Jayne (finally) Hope i get to see him again next time but i doubt it.
    The last two times i have been they have asked me if i've had any infections (i havent), i take it my markers must be high again but they didnt tell me, suppose i should've asked!

    Was completely awestruck i saw the top guy. I came home and googled how much 2 Rituximab infusions are...3000!! Blimey. Fingers crossed the funding comes through quickish...Dr Jayne said they have a lot more last sucess with Rituximab...? Cant wait to lessen my drugs...i really will end the year with a bang if i do!
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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    Photos up vdub x
    I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps. Jack

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