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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!