Just thought I would give an update... Today I have started on the Avacopan trial. I have had rituximab which I have to have every Thursday for 4 weeks, and then I am either taking Avacopan or Prednisolone. I don't know which!!
I've not heard of that drug - is it a possible replacement for pred?
It is yes, so as its a blind trial I don't actually know if I'm on pred or Avacopan.
There is an article about this drug in the VUK newsletter. It was discussed at the VUK AGM. 😊
Thanks Susan. I'll look it up x
It was the one the rheumy talked about at the RD&E talk mentioned in my article.
Roy lesha, I shouldn't be allowed out - my memory is like a sieve 🙄
Lol he didn't mention it by name in the talk, just as "Ccx168, a C5aR inhibitor" but 'tis the same drug
It won't be long now before the newsletter is published too 😊
What type of vasculitis do you have? Where is the trial based?
Hi Amy, I have either MPA or GPA. I'll be honest, I don't know which, the consultant hasn't specified. I'm at Royal Berks, Reading. but I believe there are hospitals nationwide that are taking part in the trial. I believe I am either the first or most definitely one of the first in this country.
Here are the trial details. Only for ANCA associated Vasculitis at the moment.
Hi HFox, I hadn't heard of Avacopan either. It'd encouraging that that a new drug is being trialed as an alternative to Prednisolone and its many side effects. I found it bit more about it on this link which may be of interest.
The five-year survival rates quotes in the article for AAV seem alarmingly pessimistic, especially as I have MPA. I wouldn't have just booked a holiday had I known :-). Not sure where the stats have come from but they don't seem to stack up for the UK. Hope your trial goes well. Chris
I couldn't open the file so can't see the statistics you refer to.
The 1 and 5 yr survival rates for AAV are worse than breast and prostate cancer but no one knows why. I suspect that it's a mix of late diagnosis, poor treatment and medication side effects as well as severe, refractory disease.
What they do know is that the treatment for AAV, especially long term, high dose pred, is associated with harm. Hopefully Avacopan will help with this.
Enjoy your holiday. 😄
I think you are right regarding the reasons. Sorry you couldn't open the link. It seems to work for me. I have seen similar stats back in 2012 when I first researched my diagnosis but have always regarded them as a bit questionable.
Unfortunately the stats are true and are quoted in the guidelines for AAV.
Part of it is probably that the treatment for breast and Prostate cancer has improved so much over the years.
The last thing I want to do is worry anyone unnecessarily, it can be a difficult balance between raising awareness and being OTT.
As part of the helpline team I get contacted by people all over the UK who have lost loved ones to Vasculitis when with better treatment arguably that shouldn't have been the outcome.
I do believe the biggest difference that patients can make is to be aware of the risks of infection whilst taking pred and other immunosupressants and push for proper treatment when showing signs and symptoms of infection. Unfortunately too many medical staff don't realise that the signs and symptoms of sepsis can be blunted in those that are immunosupressed and that they are at increased risk of atypical infection.
Will get off my soap box now! 😀
I was honestly shocked at how many doctors in A&E, how many Med Reg's and GP's have little or no knowledge at all of AAV. My GP fortunately did the ANCA test as I wouldn't stop moaning at him that I was ill. But everyone seems very surprised that he picked it up with my, what seemed at the time, random non-specific symptoms.
I did ask him what made him consider vasculitis and he started talking about horses and zebras and I got a bit lost in what he was saying.
Medics are taught in medical School
" if you hear hoofbeats think horses not zebras " and " common is common ".
Basically they rule out the common ( horses ) before looking for the rare ( zebras ).
The NHS would be bankrupt within the week if everyone that was unwell was investigated as if they had something rare. Unfortunately the fall out is diagnostic delay when you do have something rare.
Thanks Chris, I did see some of the stats when I first looked into the trial, and if I'm honest, It made me feel a bit down so I chose to ignore them, I don't know how accurate they are as it seems everything you read says something different. I feel fortunate that I have a really good consultant, that I trust and any questions I have, he answers. That's good enough for me!
I think what you need to do is create your own risk factor based on your personal circumstrances. Eg how quick was diagnosis, how badly are you affected; how well are you responding to treatment. How knowledgeable are my doctors. It certainly pays to have a positive outlook on these things. Glass half full 👍
This was tweeted by genetic alliance.
I MIGHT mention this, to my Doctor(s), however, as I am 'Stable' currently, I'm loathed to change Things. Good luck HFox though. Please do keep us 'Posted'.
I also start the rituxan today, am already on prednisone. (vascuilitis from Wegners Granulomatosis). Will be interested to see how you fare. Am 73 and have been very active and healthy to this point. Non-smoker.
Thanks for this -- am in the US, will mention Avacopan to my rheumatolgist, have rare disease GPA, start rituxan today. Am on Prednisone currently. prayers your way.
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!
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