pwc51
03-04-2010, 01:47 AM
I know by writing this and putting my head above the parapet a certain degree of nagging might ensue but, hey ho, nothing venture nothing win!
To set the scene I give a brief resume of the story so far:-
I was diagnosed in late July 09. Primary issue was sinus condition that did not respond to treatment and eventually I went deaf. (as the sinus condition seemed to result from a turbulent flight there was no reason to suspect anything else initially) At the same time joint pain became excruciating and for a time I could not walk. Fortunately I was referred to a Rheumatologist after a blood test and seen within 2 days. I was admitted to hospital – massive steroid doses restored my hearing within a day (magic). I continued with Cyclophosphamide until the end of December 09 and then transferred to methotrexate (now 20mg per week). Prednisolone has been reduced from 60mg to 7.5mg over the period.
I now feel great as per the ‘new normal’, back at work fulltime.
Existing problems:– Like everyone here it seems to be a question of balance!
Sinus problem has never gone away 100%, I would say there is still a 5% issue there but it is generally not enough to trouble me day today.
Breathless – initially I could not climb a flight of stairs without getting out of breath but now I can walk for miles over the hills without problems although if I rush upstairs I still notice a slight problem (this could be down to age and lack of fitness!). A recent X-ray showed nothing although there were shadows when I was first diagnosed.
Ankles – these swell when I have been at my desk all day. Rheumatologist thinks it is down to the blood pressure tablets but is not majorly concerned. My doctor will re-assess once the other drugs reach a stable state over the next month or so.
Finally, and the real reason for this posting, my nose has a tendency to bleed / spot when blown. This probably only started about 3 or 4 weeks ago. Nothing serious but it is most often first thing in the morning. Sometimes it does it all day and other days it is clear all day. (not that I am blowing my nose every few minutes – more like 2 hour apart). Rheumatologist did not seem concerned as everything else was good and he has been pleased with my progress. Should I be concerned or is this just part of the WG cycle?
To set the scene I give a brief resume of the story so far:-
I was diagnosed in late July 09. Primary issue was sinus condition that did not respond to treatment and eventually I went deaf. (as the sinus condition seemed to result from a turbulent flight there was no reason to suspect anything else initially) At the same time joint pain became excruciating and for a time I could not walk. Fortunately I was referred to a Rheumatologist after a blood test and seen within 2 days. I was admitted to hospital – massive steroid doses restored my hearing within a day (magic). I continued with Cyclophosphamide until the end of December 09 and then transferred to methotrexate (now 20mg per week). Prednisolone has been reduced from 60mg to 7.5mg over the period.
I now feel great as per the ‘new normal’, back at work fulltime.
Existing problems:– Like everyone here it seems to be a question of balance!
Sinus problem has never gone away 100%, I would say there is still a 5% issue there but it is generally not enough to trouble me day today.
Breathless – initially I could not climb a flight of stairs without getting out of breath but now I can walk for miles over the hills without problems although if I rush upstairs I still notice a slight problem (this could be down to age and lack of fitness!). A recent X-ray showed nothing although there were shadows when I was first diagnosed.
Ankles – these swell when I have been at my desk all day. Rheumatologist thinks it is down to the blood pressure tablets but is not majorly concerned. My doctor will re-assess once the other drugs reach a stable state over the next month or so.
Finally, and the real reason for this posting, my nose has a tendency to bleed / spot when blown. This probably only started about 3 or 4 weeks ago. Nothing serious but it is most often first thing in the morning. Sometimes it does it all day and other days it is clear all day. (not that I am blowing my nose every few minutes – more like 2 hour apart). Rheumatologist did not seem concerned as everything else was good and he has been pleased with my progress. Should I be concerned or is this just part of the WG cycle?