Avacopan trial update.

[HFox]

Just a quick update! I have had the last of my weekly Rituximab infusions.... As I have lost 8kg in 6 weeks I decided I would celebrate with KFC!!

I feel pretty well actually although I was informed last week that I need a hearing aid due to hearing loss in my right ear but my hearing wasn't great prior to my diagnoses so may not be related...

The symptoms I had with my eye, I don't know the correct term is but red and blood shot, have improved to the point where by the time I have my appointment in ophthalmology Tuesday the problem will most likely be gone!

My other symptoms, chest pain, sinus pain, constant pressure behind my eyes, odd pins and needles sensation in hand and feet, rashes, night sweats... All GONE!

I've had a bit of sickness and diarrhoea this week that my consultant said is probably viral. I have an issue with some kind of adrenalin rush feeling when I get out of bed in the morning which lasts for all of about 20 mins, I have an issue with my legs not feeling like my own and I'm pretty tired, but this is improving.

But all in all, after only 4 weeks I feel so much better.

I feel so grateful to my consultant for the care that I've been receiving, he is such a lovely man, a great doctor and I really trust him. I just can't praise him enough!

[John_Mills Volunteer]

It's good to hear from someone who is taking part in the Avacopan Trial which sounds so wonderfully promising. There is an article in the Autumn Vasculitis UK news letter discussing Avacopan. The newsletter should be dropping on doormats in the next two weeks. 😊

[Kenneth]

Hi HFox, I was diagnosed 23 years ago & had all your symptoms & more, including collapsed lung & nasal crusting. Since my infusions of Rituximab I have now been in remission for 6 years. I also want to point out that I did not suffer any reactions or side effects at all. The only medication I am still on is Co-Trimoxazole, 3 times a week. Hopefully my example will give you a better outlook with your recovery.