Avacopan, share your thoughts

[zoe69]

Dear fellow Vascies,

Vasculitis UK will appraise Avacopan-Tavneos for the Scothish Medicine Consortium.

Quotes from patients are extremely powerful, I would like us to have a lot to add to the application form.

I am looking to hear from people that are on Avacopan. I welcome comments, side effects you have experienced, your thoughts in general.

If anyone else would like to share their thoughts and experienses with steroids, please do.

Patients treated in Scotland what are your thoughts? Would you benefit from Avacopan being approved? How?

You can either comment here or send me an email to [e-mail]

[jgold]

I was diagnosed with vasculitis (MPA), which caused loss of kidney function (EGFR c40), in 2014. Initial treatment for suppression of the disease was cyclophosphamide plus a trial of what is now called avacopan versus steroids. As it was a blind trial I do not know if a received avacopan, but I do know that such side effects as I experienced were related to the cyclophosphamide.

The treatment was successful, in that I moved on to maintenance therapy after about three months. This comprised azathioprine, plus periodic doses of steroids when the vasculitis flared. The latter caused loss of bone density, which required three years treatment with alendronic acid. To avoid the need for continuing use of steroids, the azathioprine was replaced by rituximab. This has been very successful and it is now four years since I last needed a rituximab infusion.

Since my rituximab dose four years ago the vasculitis flares every two - four months, but so far it has always subsided of its own accord within a maximum of two weeks. My EGFR is generally now in the range 50-60.

It can be seen from this that I have no recent experience of steroids. However if a change in my condition made the reintroduction of steroids a possibility, I am sure that my consultants would now first consider using avacopan.

Having read much material on the subject it seems to me that now that avacopan is widely authorised in Europe and the USA, as well as in England, the well known adverse effects of steroids on many patients are such that avacopan as an alternative should be available for vasculitis consultants to consider throughout the UK.

[zoe69 Moderator Volunteer Vasculitis UK in reply to jgold]

Thank you!

[AmyS1]

Steroids have costly and serious side effects. Whilst I have no organ damage from vasculitis I have serious damage from prolonged high dose steroid use.I have developed steroids induced cataracts.

Osteoporosis

Adrenal insufficency which is potentially life threatening

Cardiovascular risks from steroids have also increased.

Severe muscle wasting.

All of the above are costly to treat.

I have a lot BMI so thankfully have not developed steroids induced diabetes but many many patients on steroids do. This is a serious illness frequently resulting in kidney damage, which is an especial risk in Vasculitis.

There are also psychological issues from steroids affecting body shape, high doses have caused insomnia which when you are trying to work and already have fatigue can prevent a return to work.

Any effective alternative to steroids should be considered for all patients with vasculitis not just those with GPA.

A huge thank you to all the healthcare professionals working on these medications.

[Mooka]

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