Hay,
i started rtx every 6 months and about 2 years ago started suffering at 4.5 to 5 months and got put on 4 month infusions, 8 months ago I stared suffering at 3 to 3.5 months and now staying...
Type: Posts; User: BenHornsby
Hay,
i started rtx every 6 months and about 2 years ago started suffering at 4.5 to 5 months and got put on 4 month infusions, 8 months ago I stared suffering at 3 to 3.5 months and now staying...
Does kinda fit well...
Sent from my SM-G930F using Tapatalk
Hay guys, these things never go away very fast any more...
Getting used to the time it takes to get on the better side if good and still fighting my way back.
I am getting better, flair signs...
Hay peeps,
I have just got out of hospital, i got admitted for 3 days as I could not breath, i thought I was having an asthma attack, but after lots of tests and xrays showed that the chest...
Welcome Cathy,
Yes a very familiar story, it's so daunting the not knowing or understanding. But time does help in getting used to it and seeing the patterns that you have.
There is so much...
Welcome ;-)
Good that you have the correct diagnosis!
Rituximab I find ok, i get heavy lead legs for a day or two after but have got used to planning round it. I have been on it for 5 years...
Oww love the idea of the cooling pillow, looking for one straight away, i randomly get the night sweats on or off the pred so would be great...
Thanks
Bx
Sent from my SM-G930F using Tapatalk
Welcome Angie ;-)
Sent from my SM-G930F using Tapatalk
Hay guys,
Thanks for the sound advise, i did read it soon after you posted, but been batterling with this for a bit again..
just had it confirmed with labs that I am in the middle of a flare...
Hay gang,
Please could you help with some advise or pointers on what i should be doing/asking, i have been loving reading your posts but not found answers that satisfy me yet.
I have just had...
Hay Lisa,
Hows your infusions going now?
I have them every 4 months and took a week to recover when i first started with them 5 years ago, but luckily now can return to work a day or two...
Hi and welcome Brittany,
So glad you have been diagnosed and can work towards treatments that help you, thoughts are with you about your partner and a very tough trip you had to get to this...
Lol love that and use it all the time, mostly "I am a dipstick"...
Sent from my SM-G930F using Tapatalk
Hi and welcome Mattieus,
So glad they realised what it is and started to deal with it, hindsight is a wonderful thing and if we knew the half of what happens to us in advance we could prevent so...
Also might be worth reading this thred:
https://www.wegeners-granulomatosis.com/forum/threads/5719-Tapering-on-predizone
Hay Masha,
I know your pain, is it all of you teeth or just one or parts? when i get it its all of mine, but not for very long just a week or 2, it comes and goes as does the condition...
How...
Hi,
As all the loverly people above have said, please push the rumatoligy department to see you!
I got my GP to refer me as she suspected a vasculitis problem and Rumatoligy have been...
Hi Sherry,
Welcome sounds like your headed in the right direction in the medical area and hope they help..
Ben
Sent from my SM-G930F using Tapatalk
This thread made my day ;-) most posts are questions or problems and to read the positive side of this exclusive club..
Congrats VW long may it last and look forward to hearing your advise and...
Hay Kitekite,
I had the same concerns, i was diagnosed just after my first born and he is 5 years old now and perfect in every way... I do worry every time he mentions pain...
I also spoke to...
Gilders thoughts are with you, it's so tough having the excitement of a solution that does not work out the way you intended.
Ben
Sent from my SM-G930F using Tapatalk
Thanks Masha
Big hugs to every1, sometimes we need reminding how special every1 is and you just did that...
And yes Andrew I can't say it enough thanks so much for your efforts in keeping this...
Hi
And a very big welcome, it is a revelation just to read some of the stories and even better therapy/help for me to post about it, as it helps me come to terms with being a Weggie and all the...
Hi Weston,
Thanks for sharing your story and welcome to this elite club.
So glad they are getting faster at recognising our condition and congrats on the insurance, i am on rituximab and love...
Hi Gliders,
Thanks for that I have seen the name Dr Jayne before in papers I have read and would not have a problem traveling it's just under 100 miles so a couple of hours. I did find some names...