Regular readers will know about my treatment regime for CLIPPERS discussed at length in previous posts (here and here and here) ? But how typical is my experience? I had a quick peer at the CLIPPERS papers to date to look for treatment patterns. What seems to be clear is that there is a generic strategy which usually involves:
There are some variations on this theme. The papers don't give much information about the detail of the treatment strategy and I'm not a doctor so it's down to speculation. My best guess is that treatment follows a pattern which is known to work in most cases so far but there is some variation which can be put down to:
I can summarise the treatment of patients I have read about (17) to date as follows:
Phase 1: Initial Treatment
- high dose IV cortico-steroids, typically 1g/day of Prednisolone for 3-5 days
- a maintenance or reducing dose of oral steroids, typically 80mg - 10mg daily
- a transition to a "steroid sparing" agent, e.g. Azathioprine or Methotrexate
There are some variations on this theme. The papers don't give much information about the detail of the treatment strategy and I'm not a doctor so it's down to speculation. My best guess is that treatment follows a pattern which is known to work in most cases so far but there is some variation which can be put down to:
- regional / national treatment practices
- foibles of individual medics
- tailoring treatment regimes to better suit individual patients
- some experimentation with treatment to (hopefully) achieve better results
I can summarise the treatment of patients I have read about (17) to date as follows:
Phase 1: Initial Treatment
- 15 had IV prednisolone for 5 (14) or 3 (1) days
- 1 had oral prenisolone at 80mg / day
- 1 had 12mg Dexamethasone weekly for 4 weeks
Phase 2: Maintenance Treatment (information is a bit more patchy here)
- Most had oral Prednisolone beginning at between 60mg and 80mg and tapering to 30mg or less
- One had 1g / month for 3 months.
Phase 3: Additional Treatment (information still a bit patchy)
So my experience of
- 1g/day IV Prednisolone for 5 days
- 60mg/day oral Prednisolone taper down to 15mg/day maintenance
- increasing dose of Azathioprine currently at 50mg/twice-daily
Remember, I'm not a doctor, so if in doubt assume I don't know what I'm talking about.
An update on my most recent scan and treatment will follow shortly.
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
