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  1. Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Thanks Tom for your feedback. I am still feeling very much like I have been hit by a truck. Fatigue is ever present. I have only a few more weeks left on the pred and the taper gets slower now so I...
  2. Abatacept/Abrogate clinical trial

    Hi all, has anyone else started this trial? I am the first one at Addenbrookes to start and just wondering how other people have taken to the trial?
    I am now in week 7. Its odd getting used to...
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    Re: Glad to be diagnosed

    Geoff, I was at Adds today! Clinic 12 for me. Good to hear how you're doing.
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    Re: Hydroxychloroquine?

    Hey mishb

    I never do anything the easy way. I have to be complicated. Thank for your feedback re plaquenil. I am hoping this works for me as well as whatever drugs I get to next. The MTX does...
  5. Re: ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomato

    I'm possibly going on this trial once the RTX is out of my body. It's a drug that's works for my mum to keep her arthritis in check and has been the only drug that work for her long term so fingers ...
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    Re: Hydroxychloroquine?

    Hi Alysia.

    You've raised a lot of good points. I did have the premeds required to stop reactions but reacted anyway. I would love to hear from others who have reacted after long term use as RTX...
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    Re: Hydroxychloroquine?

    Hi drz. I can't seem to get a straight question about my symptoms. They keep saying there is something else going on with me but obviously it's not showing in my bloods but symptoms are on the...
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    Re: Building Resistance to Rituxan

    Hi drz. Ita amazing how even now Jack is often thought of and spoken of. He will always be remembered fondly by me as he was the main reason I went to Addenbrookes and its been the best thing I've...
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    Re: Building Resistance to Rituxan

    I may be late to this party but I am in this boat right now.
    I've had RTX for at least 7 if not 8 years in various protocols under Addenbrookes. Last June I have the new generic brand of RTX called...
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    Hydroxychloroquine?

    Hi all

    Extremely long time and no posts from me.
    Those who do know me know I like to be difficult, or rather my disease likes to be difficult. I have the persistently grumbling sinus type of...
  11. Re: Will be seeing my doctor to if I have Wegeners

    Hi hazeleyes. Certainly sounds like you are on a similar path to me. I don't come on this forum much anymore but if you need someone to talk to please direct message me and I would love to offer you...
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    I've never had a remission longer than two years...

    I've never had a remission longer than two years - but that falls into what Dr Jayne expected and told me. Cant help thinking he made a self-fulfilling prophecy out of me!
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    Oh it is most definitely about money - a single...

    Oh it is most definitely about money - a single round of RTX costs the NHS 3,000. 1,000 of that is just for me to sit in the chair for 6hrs. Its madness. I'm fortunate that i come from one of the...
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    That is interesting drz. I didnt even think about...

    That is interesting drz. I didnt even think about antibiotics or future infections. Let me now what your consultant says ongoing. I would be interested to know what the latests research says. I didnt...
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    I was on the Ritazeram Tril but cos of my flare...

    I was on the Ritazeram Tril but cos of my flare i'm now off, which sucks. I really liked doing the trial. They're still going to follow me as like a side note i guess haha.

    Sorry to hear that you...
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    RTX for maintenance

    I've been caught out with my second flare in two years. I was on MTX for maintenance but this time round, as before, it wasn't holding remission for me.

    The wonderful Dr Jayne from Addenbrookes...
  17. Hey Marta, Just popping in to say i miss you. I...

    Hey Marta, Just popping in to say i miss you. I hope you are still fighting and i am sending Geoff your way with some big hugs from me x
  18. I've just passed the 6 year hurdle as well on...

    I've just passed the 6 year hurdle as well on 16th August. Here's to the next 6 years
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    Dr Jayne has told me that those with sinus...

    Dr Jayne has told me that those with sinus involvement are likely to flare within 2-5 years. If you go over this time you are likely to have a long remission. If you flare within 2-4 years then you...
  20. For those with Buttons in their nose...Advice please!

    Hello my friends.

    I've had a button in my nose for 2 years now following saddle nose, bridge collapse and a hole in my septum.

    Addenbrookes are keen to replace the button now (altho you can...
  21. I rang Addenbrookes who asked me to see my GP. ...

    I rang Addenbrookes who asked me to see my GP.

    Talked through my symptoms and my GP says her advice is to stop the Mycophenolate.

    This means I a back to Addenbrookes next week who will either...
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    I'm still thinking of him (and you) almost daily...

    I'm still thinking of him (and you) almost daily Alysia, it still doesn't seem real to me that Batman is gone.

    I remember him joking with me he would get the Bat jet and fly over to England to...
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    I have regular massages as my back gets quite...

    I have regular massages as my back gets quite stiff from time to time and I've never had any adverse affects to my disease.

    Although just make sure you're massage therapist isn't too rough with...
  24. Mycophenelate/ Cellcept sude effects??

    Hi all.

    I flared just before Christmas so was put on RTX infusions - 4 one week apart to get me into remission (plus Pred). This worked and I am currently in remission but I am also on a clinical...
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    I'm still about too but I like lurking in the...

    I'm still about too but I like lurking in the shadows.

    When I've been away a while I get a bit shy because there are so many new members on here its hard to keep track!

    It is also a bit hard to...
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