I always smile when i see Leonard Cohen and think of Jack. To me and my mind they are one and the same (but obviously not). I miss Jack so much, what a sage he was.
Type: Posts; User: freakyschizogirl
I always smile when i see Leonard Cohen and think of Jack. To me and my mind they are one and the same (but obviously not). I miss Jack so much, what a sage he was.
Hi Sissy
I hope you are now free of yeast infections so this post may be fruitless.
I have just had a bout of sinusitis, treated with antibiotics and subsequently have been battling a yeast...
Happy Disease-versary Pete - i have also been diagnosed 13 years this year.
It's been an education, that's for sure.
I think i found this forum within days of my diagnosis and i am so very glad...
Hi drz
I would be very interested to know what symptoms you (or others) are having with their eyes. I am flaring and my eyes are somewhat blurry, not all the time and wearing my reading glasses is...
Hi Bindy
I think thats what happened to me. I was on RTX for years and over time, and the cells would come back quicker each time. I do think switching between the two different form of RTX was...
Hey Vera
Apologies, my message may come too late - i hope you have found a hospital that can help your husband. I had nose reconstruction surgery ten years ago in the UK but they used cartilige...
Hi DRZ
I don't have a lot to offer in way of advice. But i know that putting coconut oil in my nose helps to break down crusting.
I am sorry to hear you're having these pesky symtoms despite...
I like that drz. GPA localised to the sinuses, localised to lungs... etc.
Thanks Christina.
I think your final comment is spot on "GPA is called a 'systemic' disease.
The whole system is involved, even if it is called only 'limited'...:sad::ohmy:"
Interesting point Don (Hello by the way! Havent spoken to you in years :biggrin1: )
Maybe its me having issues with medical terminology? The wording is somewhat derogatory to me, and i've felt...
Couldnt agree more JBee.
I think, in my mind anyway, that "mild" and "limited" are the same thing.
Thank you for replying :thumbsup:
My favourite reply so far! :hug3:
Evening All
I've wanted to post about this subject for a while now so please excuse my ramblings in advance and everything below is said with the upmost respect for all of us diagnosed with this...
Hi tmesis
Glad to hear the examination went well.
When you've been in the game a fear years (and feel brave enough) get them to allow you to see what the camera shows.
I have a hole in my...
Hey Mishb
I'm back. Been away from the forum and other support groups for a while as i went through a really rough patch 3 years ago when i flared hard.
Currently on the ABROGATE trial and...
Hi Anabanana
Welcome to the forum.
I've been diagnosed 11yrs now with GPA and also have the "limited" version - GPA really loves my nose and has been happily co-habitating on and off in there...
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...
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...
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...
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...
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...
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...
Geoff, I was at Adds today! Clinic 12 for me. Good to hear how you're doing.
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...