Is there anyone out there in South Wales or ... - Vasculitis UK
Is there anyone out there in South Wales or South West England with Churg Strauss Syndrome ? If so I would love to hear from them.
yes..there is a lady just moved to Cardiff from England I will get in touch and see if she is ok to have a chat.. 
Great. I was diagnosed with CSS in January this year and my heart was also affected. I would like to compare treatments if possible. I am a lady in my 50's.
Hi Bumble. I don't live in the South West (I live in the South East). However I DO have CSS and my heart was also affected. I'm also a lady in my 50's! Happy to chat with you if you need info.
Thank you BerkshireBird.
I'm currently being treated mainly with prednisolone, mycrophenolate and ramipril at the moment but have previously also received infusions of prednisolone and a type of cancer treatment drug.
I will be having another review at the end of this week but notice that my bones are becoming weaker ( I have recently broken a wrist and a vertebrae), my sinuses are starting to play up, I still get out of breath and have started to cough again although the good news is that I ve been told my heart is making good progress.
I recently went back to work part-time but now I'm off again.
I also keep getting infections which doesnt help as I never know where I am with this illness.
Hi, Currently I'm on Ramipril & Bisoprolol, Furosemide & Spironolactone for my heart. If you don't mind me asking what did the CSS do to your heart and what effect has that had? I used to get a chest infection nearly every month whilst on Methotrexate. Thankfully I'm no longer on any immunosuppressants, just Pred.
Hi, I don't know if you are aware we have a vasculitis support group in the South West? We have a few members with CS who I could put you in touch with. Are you based in Wales or South West as we are meeting up for lunch near Exeter at the end of this month if you wanted to join us? If you'd like more information or to contact me (I run the group) either private message me or you can get my contact details from the Vasculitis UK website. Best wishes Charlotte (Stoner)
Yes me. Karen.😁
