Well, this is so exciting. Yes, I know that sounds very sad, but after eleven years of various doses of prednisolone, the dreaded steroids, I am so relieved that maybe I can finally stop taking them. Avocapan is a new medicine used to treat ANCA-associated Vasculitis (AAV) under the trade name Tavenos (Vifor Pharma). The drug blocks the complement C5a receptor (don’t worry about the techy stuff), which reduces the ability of immune cells, such as Neutrophils, to damage the body. This works in a different manner to prednisolone, so they can be taken alongside each other whilst you reduce the steroid.
Avocapan is increasingly being given to newly diagnosed patients as an alternative to steroids. The evidence is limited in their comparison, and so further investigations are ongoing. Vasculitis UK will provide updates as they become available.
The relief of the possibility to stop prednisolone.
I have been dreaming of getting off steroids, seriously dreaming. I don’t dream of money or cars but getting off these small chalk disks. I have tried many times to reduce the dose but have never managed to get below a dose of 7mg a day over the last twelve years. The side effects of steroids are numerous and nasty. From weight gain, mood swings, bone damage, and steroid toxicity, the list is long. And I seem to be getting a fair few of these issues.
The thought of a drug that can give me the same protection but without the same side effects has been a fantasy, so when clinicians started to mention it as an option, I tried to curtail my excitement. After 12 years of trying to control my Vasculitis and five months of trying to recover from COVID/Pneumonia, it became clear that I needed some extra help. The suggestion was made that adding Avocapan may help me to feel brighter and reduce my steroids.
I had to wait for my case to be approved by the Multi-disciplinary Team (MDT) at the hospital, as the drug is new and expensive. So, all patients need to go through the MDT approval process. Once prescribed, I needed to collect it from the hospital pharmacy – this is a specialised drug used only for Vasculitis, so it is unavailable through the GP/local pharmacy. Walking to the car to go home, I felt like I had won the lottery. I could not stop smiling.
The first few days
Well, I had some bizarre dreams, and initially, I felt like I was going backwards. But, as I had had a horrible six months battling COVID and pneumonia, this strange feeling could just be my body asking what I was doing to it now. I had a mild upset stomach for a few days. Both the dreams and the upset stomach soon settled. I didn’t really have any other side effects.
I could happily put up with a few days of lack of sleep and strange dreams involving people I had never dreamt about before. The only other negative is that I needed to take six large tablets a day, but after trying plenty of medication over the years, this was a minor inconvenience.
Longer-term success and reducing prednisolone
I had been on 30mg and had dropped to 17mg a day slowly following COVID-19, so I had a way to go. I was told to not rush the reduction, as I had been so ill. I started to reduce by 1mg per two weeks. It was a very slow process, but I had been on steroids for over a decade, so my body was somewhat used to receiving them every morning after breakfast. My only advice is not to rush reducing the medication – it is not a competition.
I have now been on Avocapan for 11 months, and it has allowed me to get my steroids down to 5mg a day – this may not sound like an achievement for some. But this is the lowest I have been in 12 years. 12 years is a long time to be aiming for something. And finally, I have achieved what I thought was impossible.
At my last clinic appointment, we discussed stopping Avocapan, as after a year, the hospital must request a review via the MDT to confirm if further use is needed. As it appears that my Vasculitis is stable, I believe stopping Avocapan would be the right choice for me. It will mean that for the first time in years, my number of tablets per day will be under 10… this is a significant success for me.
Since COVID, I have had a terrible time, but using Avocapan has been a huge positive in this time. A way to improve my quality of life and help me make positive moves in my journey.
It is about choice
Avocapan does not replace steroids for every situation; it will not work for everyone. Steroids will still be the best option for some. However, this new medication allows clinicians to choose how to treat patients with Vasculitis. A choice, an alternative to steroids, this must be a good thing.
I hope it leads to further research and more effective treatments for us and an expanding choice of options to get this damn disease under control.
Jane Edwards
For more information on avocopan, see our Glossary of Drugs page