Search:

Type: Posts; User: freakyschizogirl

Page 1 of 20 1 2 3 4

Search: Search took 0.04 seconds.

  1. Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi Gary

    Being tagged by Alysia I feel duty bound to reply :).
    I am under Addenbrookes and would say easily that Dr Jayne is the top bloke to see or have your doctor's consult with, especially...
  2. Re: Abatacept/Abrogate clinical trial

    Hi Me2, the abatacept trial finishes in about a years time. For me in the UK it isnt approved yet for WG but if i take it and it works for me Addenbrookes will put in a good case for me to continue...
  3. Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Hi to anyone reading this.

    I wanted to bump this post as i know there are 60 people worldwide on this trial and it would be nice to chat to someone else who is on this trial.

    Just to give a...
  4. Replies
    133
    Views
    9,782

    Re: Coronavirus and GPA

    Thanks for thinking of me Alysia... I would not touch Truxima again with a ten foot barge poll. Started off two years of hell with me and I also know of two other Weggie friends who have not had...
  5. 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...
  6. 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...
  7. Replies
    99
    Views
    13,694

    Re: Glad to be diagnosed

    Geoff, I was at Adds today! Clinic 12 for me. Good to hear how you're doing.
  8. Replies
    7
    Views
    1,317

    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...
  9. 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 ...
  10. Replies
    7
    Views
    1,317

    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...
  11. Replies
    7
    Views
    1,317

    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...
  12. Replies
    21
    Views
    3,737

    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...
  13. Replies
    21
    Views
    3,737

    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...
  14. Replies
    7
    Views
    1,317

    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...
  15. 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...
  16. Replies
    27
    Views
    3,339

    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!
  17. Replies
    27
    Views
    3,339

    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...
  18. Replies
    27
    Views
    3,339

    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...
  19. Replies
    27
    Views
    3,339

    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...
  20. Replies
    27
    Views
    3,339

    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...
  21. 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
  22. 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
  23. Replies
    44
    Views
    3,161

    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...
  24. 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...
  25. 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...
Results 1 to 25 of 500
Page 1 of 20 1 2 3 4