I wanted to add an update based on my monthly visit to the haematologists yesterday as the results were better than I thought they would be! You know me by now, always plan for the worst…

The impact of the photopheresis is really positive as:

• my eyes are getting better… Less dry than before
• I do not have that never ending leg pain anymore
• No more “crazy” lymphocytes in my blood tests
• I regain some skin flexibility already

What does this mean concretely in my day-to-day life:

• Less immune suppressors to swallow!
• Easier to walk
• Sleep better as the pain disappeared
• Increased confidence that photopheresis is the way to go for me
• Extend treatment for another quarter at the same pace
• Better future perspectives

Despite some side-effects due to the immune suppressors like higher cholesterol and triglycerides… The news are thus good and recovery is still a decent target.

So glad to share this with you all and will keep you informed of the progress…

It is good to be 5 years old!