AOSD Update.

This is another of my regular updates on how I am progressing/coping with Adult Onset Stills Disease.  The following graph gives you an overview of symptoms:

 

 

Here are the highlights:

 

  1. For most of this period I have been on 20MG of Prednisolone
  2. I have continued to have good and bad days, more bad than good until recently
  3. Then I had a period of 18 good days, the longest period of good health for 7 months, I put this down to the Steroids finally kicking in.  Of course during this time the sleeplessness got worse so I was still pretty tired, but when there is less pain life seems so much better!
  4. I went to see my specialist last week he said given the fact that I am feeling much better I need to cut the Prednisolone to 10MG and then drop it by 1MG per week.  As I have now been on Prednisolone for well over a year I needed a bone scan as well
  5. I had the bone scan and it reveals that there is some cause for concern, but it not too bad at the moment.  I was pretty disappointed by this as I have put a lot of effort into my diet and exercise to try and maintain bone density.
  6. My specialist has also said that he wants me to consider going onto Azathioprine or Methotrexate and that I need to decide which set of side effects I fancy having the most L.  Neither looks very inviting. 
  7. Feedback from the Stills Message Board seems to favour Methotrexate but I am keen to avoid either, I just don’t know what to do to achieve it, but I am trying as many lifestyle, and diet options as possible.
  8. I have just got back from 3 nights away in Scotland.  Something strange happens on holidays I always seem to feel much better, in fact twice on holiday I have been completely symptom free for 2 days!.  This has had me thinking that there is some miracle cure waiting to be found and I have thought through the options.
    1. Less stress; I don’t think this is the reason, holidays are actually quite stressful, lots of time cramped in the car and caravan with 4 squabbling kids etc.
    2. Different diet; I thought this was a factor as on one holiday by chance I had a dairy free diet, but I have tested that since and it didn’t have a huge effect, certainly not significant enough to account for the variation I see in symptoms
    3. More exercise; when we are on holiday we walk a lot; of course I only go on holiday when I am feeling pretty good in the first place.  I think there is something in this, the continued low intensity exercise does seem to help, and I have noticed this at home as well.  The problem seems to be when I stop even for a day symptoms spring back and then it takes a while to build up the exercise levels again.  I am talking about 3 hours of walking a day here, that’s a lot of exercise! When my symptoms spring back 10 minutes is too much!  When I am, flaring getting down the stairs is way to much.
    4. I eat more, because I exercise more I allow myself to eat more snacks, mainly in the form of fruit or dried fruit bars.  It’s possible that there is something to investigate here.
    5. Weather; we have been pretty lucky this year in that we have had really good weather, very sunny and not too humid.  I think there is something in this as well, partly mental and partly physical.  Also good weather tends to encourage exercise, so it reinforces the point above
    6. No work on the computer; I hope this isn’t a factor, (because its my job), but its possible that the sitting around for a lot of the day is a factor.  I use RSI guard on my PC that forces me to keep taking breaks and this does seem to help.
    7. I sleep better, I almost always take sleeping tablets on holiday as the caravans are so hot and the beds uncomfy etc, so I get a very good nights sleep.  I think there is something in this as well.  When I feel really bad I do find that taking sleeping tablets for a couple of days helps.
  9. Anyway I am back from holiday and my symptoms are back again, (I have also been under more pressure than usual at work for a few days).  Wrists, Ankles and Knees are the worst.  I have a sore throat again, headaches every day and difficulty concentrating.  I am hoping that some of this is Steroid withdrawal. 
  10. I am going to try the sleeping pill trick again for 2 nights, and try and exercise but its difficult.  However I have learned that the symptom pattern is very variable and it may be at the end of the day that I never find a pattern of external events that cause a trigger.  I am just not at the point where I give in to it being something I am unable to influence.

Steve Richards

I'm retired from work as a business and IT strategist. now I'm travelling, hiking, cycling, swimming, reading, gardening, learning, writing this blog and generally enjoying good times with friends and family

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