Health Update
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.
As always exercise continues to help, but its hard to motivate myself to do it when I hurt, so getting a new mobile media player for walking and swimming is a key investment to that end.
