Hi all, very interested to read this blog - thanks for sharing your experiences. My mother-in-law is in her 60's and has had WG for 3 years. It's taken a real toll; 3 years of steroids have left her swollen, bruised and tired. She has had surgery on her cateracts but now has issues with her ears.
She does make progress but every time they reduce the steroids, the WG flares up again.
They are now looking into a Rituximab infusion instead of more steroids.
I am curious to know 2 things:
(1) Experiences of Rituximab
(2) Importance of managing the diet. I see that in other countries, WG sufferers are put on strict low salt/low sugar diets. I saw one person here referred to a large increase in their intake of fresh fruit/veg. Is this course of treatment being overlooked by UK doctors?
Thanks for any advice. Dan
Hi Dan, my husband has suffered with WG for over 10 years now. He had his first relapse in 2013 and that's when they started him on Rituximab. His first chemo was at the hospital so they could monitor him if he had any type of reaction to the treatment, luckily he had no side effects except for being fatigued. He is suppose to go every six months for Rituximab with a dose of steroids to keep his WG in remission but because my husband is in his 30s he does not want to keep taking the chemo and steroids because if the long term side effects. I have turned to jucing for him. You can look into that as well as eating healthier for your mother. I have found a lot of good jucing recipes for anti inflamation and auto immune diseases on google. I don't know if it will help keep things in remission but he does feel better and his rheumatologist follows up with him closely. I hope this helps and wish you and your mother the best!
Courtney
Hi Dan
A really interesting post. I have was diagnosed with WG in 1999 - and have been on a cocktail of drugs ever since. No one has ever mentioned diet. I'm now being cared for by the Vasculitus Centre of Excellence at Addenbrookes Hospital (UK) the world's leading centre - I'm going to show your post to Dr David Jayne (No 1 expert on Vasculitus worldwide) and let you know his answer.
Good luck
Dave
what did Dr. Jayne say about juicing and diet for auto-immune / WG??
Hi Susan
I'm seeing Dr Jayne later this month - I won't forget to talk about diet with him. I'll get back to you after.
Best
Dave