As readers of my blog know I suffer from Adult Onset Stills, a rare disease that affects 1 in about 200,000 people. Since my last major flare about 13 months ago a combination of Steroids and Immune System Suppresents have managed to get the primary inflammation under control leaving me with chronic pain and fatigue which varies from day to day. I cope pretty well with this by working from home etc, and its all well documented in this blog.
Right now I just slowly turning the corner after a couple of bad months, but the recovery is very slow and is going in fits and starts.
The graph shows the daily symptom levels for the last 6 months. However progress has been made as follows:
- I have reduced my Prednisolone levels to 5mg, which is a safe level
- I have increased my Methotrexate level to 15 mg and the 2 weekly blood tests are showing that I am tolerating it well, ie its not having a toxic affect. It has however given me migraine headaches every week that last about 48 hours.
- Luckily my GP also gave me Amitriptyline 35mg for the pain, which also has a common side effect of reducing the intensity and frequency of my migraine. Although it’s not done much for the joint and muscle pain.
- I have reduced my dependency on sleeping tablets as well to 5mg a day of Nitrazepam, I was struggling to get to sleep because the throbbing pain in my joints was keeping me awake, but that is not quite so bad now.
- When I do get migraine I am now taking MigraMax which is a special formulation of Aspirin which I take as soon as a sense a migraine starting and so far it has worked like a dream.
- I saw my specialist today and he wants me to also start to take Mobic, which is an anti-inflammatory drug, which he hopes will also help with the pain.
Overall I am feeling pretty positive and after having a couple of weeks off sick and a gradual return to work (4 hours a day on average now) I am hoping to get stuck into a new job within the next week or so. Hopefully the motivation of the new job will also help me work through the pain.