AOSD Update

Well it’s that time again.  A quick look back at the last month and how I have coped and what I have learned about AOSD.  Here is a summary chart showing cumulative symptoms:

 

 

 

  1. At my last visit to my specialist I was on 20mg of Prednisone, I was doing pretty well but my bone density scan showed I was below normal.
  2. We agreed that I would reduce to 10mg and then taper off to zero and transition to Methotrexate.
  3. Just after this visit I came across some articles that suggested that sustained medium intensity exercise produced natural Cortisol and I began to get excited about the prospect of substituting exercise for Prednisone.  This didn’t work and I blogged about that in much more detail here
  4. As I reduced the Prednisone I introduced a NSAID Celebrex
  5. Anyway I slowly came off Prednisone, I seemed to be doing reasonably OK and I initially put the gradual increase in pain down to Prednisone withdrawal.
  6. Then all of a sudden I was hit with really bad waves of fatigue, very poor concentration, plenty of tendon and joint pain, headaches etc.  I was feeling really rough. 
  7. At first the doctor thought this was an infection, so I started monitoring my temperature but there was no sign of fever.  Even so he was reluctant to put me back on Prednisone.  After a while we agreed it was unlikely to be an infection so I went back on 10mg Prednisone. 
  8. Within about 5 days I was feeling quite a lot better.  That’s where I am now; I have just had the blood tests to check that I am OK to go onto Methotrexate, and am expecting to start tapering the Prednisone in about 6 weeks once the Methotrexate has kicked in.

I did discover something interesting though during this flare.  Over the last 9 months I have not suffered from the high cyclic temperatures.  I put this down to being on the Prednisone.  I did however notice that my normal temperature (which used be bang on 98.6 ) had reduced to about 98.  For this short period while I was off Prednisone I monitored my temperature and I had a typical daily Stills temperature cycle, but from 96 to 98, whereas previously with Stills my cycle had been from 98.6 to 101-102.  I also plotted my fatigue/concentration levels against my temperature and not surprisingly when my temperature was low I felt very fatigued and had difficulty concentrating.  Strangely I never felt cold, in fact when my temperature got near normal it felt as if I had a fever, (sweating and shivers).

 

This is what my temperature looked like:

 

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

3 Responses

  1. Anonymous says:

    hey,what r u talking about??

    what does AOSD stands for here??

  2. Anonymous says:

    AOSD Stands for Adult Onset Stills Disease

    http://steves.businessblog.com/blog/Me/AOSD

  3. Anonymous says:

    my god!!

    in software industry there is an AOSD standing for aspect oriented software development.

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