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Type: Posts; User: pwc51

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  1. Replies
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    Poll: I am only given RTX when I flare. 4 flares in 7...

    I am only given RTX when I flare. 4 flares in 7 years at roughly equal intervals. Last of latest pair of infusions was yesterday! I have asked about its use for maintenance by my rheumatologist seems...
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    For me I have had 3 pairs of RTX infusions for...

    For me I have had 3 pairs of RTX infusions for flares. Using MTX in between. I am just about to have another pair as I have flared again (4 flares in 7 years).

    I had asked my rheumatologist for...
  3. Well done Marta, very proud of you. I hope your...

    Well done Marta, very proud of you. I hope your experience with RTX is as good as mine? I have had 3 flares, each treated with RTX which has worked quickly and effectively. The last was now about 18...
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    I have flared 3 times since original treatment....

    I have flared 3 times since original treatment. Each time I have been on MTX and usually stopped pred. I am not sure I can relate the flares to any particular treatment or whether it is often...
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    One thing that will become apparent from this...

    One thing that will become apparent from this forum is that there are almost as many variations of treatment as there are people posting here! These differences are by the person, the country, the...
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    darl-p - I have found that I am aware of my...

    darl-p - I have found that I am aware of my flares before the bloods indicate anything! Sadly my team only tend to react to the blood results so there are sometimes a few days lost when treatment...
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    I have been pressing for RTX for maintenance but...

    I have been pressing for RTX for maintenance but recently learnt that in the UK they do a test prior to RTX infusion and if one of the readings, I can't remember which, is out of range RTX is not...
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    Brilliant - keeping my fingers crossed!

    Brilliant - keeping my fingers crossed!
  9. Thread: What, me worry?

    by pwc51
    Replies
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    2,013

    Wow - fancy being able to keep your hands off it...

    Wow - fancy being able to keep your hands off it all that time! No wonder it looks so good. What a great project to keep your mind off this awful condition.
  10. Thread: What, me worry?

    by pwc51
    Replies
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    2,013

    A real car!!!

    A real car!!!
  11. Thread: Tooth Discomfort

    by pwc51
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    619

    I think it is sinus related - Dentist can see...

    I think it is sinus related - Dentist can see nothing. I am just getting over a bad cold (started well after the onset of the tooth problem) which has exacerbated the problem. Once through the cold I...
  12. Thread: Tooth Discomfort

    by pwc51
    Replies
    9
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    619

    Tooth Discomfort

    Does anyone experience tooth discomfort with GPA / WG? I have just started to get intermittent aching of my teeth. It is certainly not tooth-ache.

    I have had GPA / WG for 6 years. I remember a...
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    The team seem to have fixed the issues with the...

    The team seem to have fixed the issues with the site. Also, certainly now appeared secure to me too.
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    Completely agree Bob - I'll wait to see if they...

    Completely agree Bob - I'll wait to see if they manage to fix the problem!
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    823

    I have registered using a birth date that had a...

    I have registered using a birth date that had a day and year that are interchangeable! Started filling in the forms and then they started giving errors (probably because it kept putting UK phone...
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    823

    Sadly I am older than 1958! - the system...

    Sadly I am older than 1958! - the system automatically puts the date format when using the calendar. If I type the date incorrectly it will not let me pass the field yet, as soon as I hit Register,...
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    823

    I have been trying to register but am...

    I have been trying to register but am encountering problems with the system saying my date of birth is invalid! I know I am old, but not that old!!!
  18. Replies
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    Something has changed as I cannot get to the site...

    Something has changed as I cannot get to the site without selecting an email link to an actual post - trying the normal web address on its own just hangs for me.
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    Thank you drz - had wanted to follow your example...

    Thank you drz - had wanted to follow your example for the same reasons but was overruled! At the Vasculitis Symposium that past weekend the consensus was that the jury is currently out as to whether...
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    On my consultant's insistence, and despite my...

    On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days...
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    I went to the Vasculitis UK Patient Symposium in...

    I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the...
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    I have just done 4 days alternating 5mg and zero...

    I have just done 4 days alternating 5mg and zero - have been feeling pretty uncomfortable today after zero yesterday so think I may stop the reduction for a bit and take it a bit slower. Has anybody...
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    My consultant insists on me getting to zero pred...

    My consultant insists on me getting to zero pred in a short period of time, despite my protestations! He is convinced that RTX is what is really working and that I don't need pred. I am currently in...
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    What a star and ambassador for us - I just wish I...

    What a star and ambassador for us - I just wish I could do some of those things!
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    RTX worked for me where Cyclophosphamide failed -...

    RTX worked for me where Cyclophosphamide failed - pred trending to zero but still on Methotrxate. I have had 3 courses of RTX treatment - each time after a flare. We are looking to see if we can...
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