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Sorry to learn of your illness and wish you well. However, there is no need to be other than positive.
Like you I am 49. I was diagnosed in Oct 04 and shortly thereafter went on the PT1 trial. I have just completed the annual questionnaire. I am currently on a daily baby aspirin and 500mg of hydroxyurea on weekdays with (now) none at weekends. During the year and following regular monitoring my doses have gone up and down to get the dosage right. I am told that Hydroxy is slow acting and that it does take a while to get the dose right.
I was tested last week and my current platelet count is 305 which is excellent. I must also say that I feel very well indeed and of course happy that something is being done to help me by people who are experts in their field.
Whilst nobody would take hydroxy for the fun of it, I am quite satisfied that the perils of the illness (serious thrombotic events etc) as well as the smaller nuisances are less than the usual side effects and potential long term implications of the drug. My haematologist advises that she has been giving hydroxy to babies with sickle cell anaemia for 20 plus years with no adverse problems and it is now thought to be very safe. The New England Journal of Medicine has reported that the interim results of the PT1 Trial are promising and no doubt the full term results will
be informative for all of us whether or not we are on the trial.
We should all learn as much as possible about or maladies and it is great to swap anecdotes from others with the same problem but it is important to be circumspect about acting on medical advice from the unqualified, particularly those who have never heard of PT, seek to charge you money, and require you to have faith in them and their unproven treatments and who react badly when challenged. Perhaps this is just the sort of advice that I am telling you to ignore, but if people espouse opinions that do not stand up to challenge, they are not the sort of people who you would want to cut your toe nails let alone tinker with your body and its functions.

To the many members of the PL fan club, I apologise for my absence over recent weeks. This is due to a broken thumb. Perhaps it was caused by my parents in 1956 when they had me innoculated. More likely it was because I fell off my bike earlier in the month.

PL